Journal History
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Tuesday, April 9, 2019 1:33 PM CDT
Delaney’s Birthday is today!! She is 23 years old in heaven!!
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
______________________________________________
I miss having Delaney in our day-to-day lives. I wonder what she would have looked like. I wonder what her personality would be like. Delaney is my middle child. Today, Delaney would be 23 years old.
Delaney visits us in our garden as a beautiful butterfly!! She likes to visit us during different times of the day and in all seasons. Here is hoping Delaney visits you as a butterfly.
Sending much love and kisses to Delaney in heaven.
We love you,
Dad, Mom, brother Kevin, 26, and sister Shelley, 19
Monday, April 9, 2018 6:43 PM CDT
Delaney’s Birthday is today!! She is 22 years old in heaven!!
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
______________________________________________
I miss having Delaney in our day-to-day lives. I wonder what she would have looked like. I wonder what her personality would be like. Delaney is my middle child. Today, Delaney would be 22 years old.
Delaney visits us in our garden as a beautiful butterfly!! She likes to visit us during different times of the day and in all seasons. Here is hoping Delaney visits you as a butterfly.
Sending much love and kisses to Delaney in heaven.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Sunday, January 7, 2018 4:09 PM CST
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
I miss having Delaney in our day-to-day lives.
I wonder what she would have looked like. I wonder what her personality would be like. Delaney is my middle child. Today, Delaney would be 21 years old.
Delaney's older brother, Kevin, is 25 and has high-functioning Autism. Kevin is attending college and he is in CIP (College Internship Program) in Long Beach, CA, which is a great program for high-functioning Autism young adults. Kevin is working at Disneyland in Anaheim, CA.
Delaney's younger sister, Shelley, is 18 and she graduated from Torrey Pines High School in June 2017. Shelley is working and enjoying life.
Bob, and I have been married for 27 years. We all miss Delaney very much and we continue our lives as Delaney would have wanted us to.
Sending much love and kisses to Delaney in heaven. Above is a picture of beautiful Delaney when she was four.
We love you,
Dad, Mom, brother Kevin, and sister Shelley
Sunday, January 7, 2018 4:02 PM CST
Delaney became a beautiful angel in heaven on January 7, 2002 ... Sixteen years ago today.
We love her and miss her every day.
Here is what I wrote on her website on January 7, 2002. All of our feelings of love and sadness years ago still hold true.
We love you dearly, Miss Delaney.
Bob, Amy, Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday, January 07, 2002 at 10:32 AM (CST)
January 7, 2002 – Heaven has a new angel - Delaney is in Heaven. She is now a beautiful angel in heaven instead of on Earth. She is with God and Grandma Betty (Amy’s Mom) now. She is watching over all those people that she loved here on Earth.
We are sad for the loss of our beautiful child, and will forever be filled with the joy, strength and love that she brought to us. We were so blessed that she was part of our family for 5 ½ years.
Her positive spirit and her way of amazing the doctors remained with her until her final moments here. The infections and leukemia in her body created an imbalance in her body that took her early this morning. She went peacefully, without pain, with Bob and I holding her in our arms.
She loved her family and friends very much. These were the things most important to her throughout life. She loved and experienced life with her ‘Delaney’ attitude and zest for living. She will be greatly missed.
Thank you for all of your continued support and prayers for our family during this journey.
Amy, Bob, Kevin, and Angel Delaney
Delaney Wilson Wright
April 9, 1996 ~ January 7, 2002
Saturday, April 9, 2016 6:05 PM CDT
Today, April 9, is Delaney's
Birthday. Delaney would have turned 20 today. Delaney passed in January 2002 due to AML Leukemia at the age of 5 1/2.
I miss having Delaney in our day-to-day lives.
I wonder what she would have looked like. I wonder what her personality would be like. Delaney is my middle child.
Delaney's older brother, Kevin, is 23 and has high-functioning Autism. Kevin is attending community college and he is in CIP (College Internship Program) which is a great program for him.
Delaney's younger sister, Shelley, is 16 and she is a Junior in high school. Shelley works hard in high school, and she is earning good grades.
My husband, Bob, and I have been married for 26 years.
We all miss Delaney very much and we continue our lives as Delaney would have wanted us to.
Sending much love and kisses to Delaney in heaven. Here is a picture of beautiful Delaney when she was four.
Thursday, January 7, 2016 11:44 AM CST
Delaney became a beautiful angel in heaven on January 7, 2002 ... Fourteen years ago today.
We love her and miss her every day. Here is what I wrote on her website on January 7, 2002. All of our feelings of love and sadness years ago still hold true.
We love you dearly, Miss Delaney.
Bob, Amy, Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday, January 07, 2002 at 10:32 AM (CST)
January 7, 2002 – Heaven has a new angel - Delaney is in Heaven. She is now a beautiful angel in heaven instead of on Earth. She is with God and Grandma Betty (Amy’s Mom) now. She is watching over all those people that she loved here on Earth.
We are sad for the loss of our beautiful child, and will forever be filled with the joy, strength and love that she brought to us. We were so blessed that she was part of our family for 5 ½ years.
Her positive spirit and her way of amazing the doctors remained with her until her final moments here. The infections and leukemia in her body created an imbalance in her body that took her early this morning. She went peacefully, without pain, with Bob and I holding her in our arms.
She loved her family and friends very much. These were the things most important to her throughout life. She loved and experienced life with her ‘Delaney’ attitude and zest for living. She will be greatly missed.
Thank you for all of your continued support and prayers for our family during this journey.
Amy, Bob, Kevin, and Angel Delaney
Delaney Wilson Wright
April 9, 1996 ~ January 7, 2002
Tuesday, January 7, 2014 1:32 PM CST
Delaney,
We love you and miss you every day of every year. You would be 17 years old and a senior in high school, probably at CCA with Miranda.
Delaney became a beautiful angel in heaven on January 7, 2002.
Here is what I wrote on her website on January 7, 2002. All of our feelings of love and sadness many years ago still hold true.
We love you dearly, Miss Delaney.
Bob, Amy, Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday, January 07, 2002 at 10:32 AM (CST)
January 7, 2002 – Heaven has a new angel - Delaney is in Heaven. She is now a beautiful angel in heaven instead of on Earth. She is with God and Grandma Betty (Amy’s Mom) now. She is watching over all those people that she loved here on Earth.
We are sad for the loss of our beautiful child, and will forever be filled with the joy, strength and love that she brought to us. We were so blessed that she was part of our family for 5 ½ years.
Her positive spirit and her way of amazing the doctors remained with her until her final moments here. The infections and leukemia in her body created an imbalance in her body that took her early this morning. She went peacefully, without pain, with Bob and I holding her in our arms.
She loved her family and friends very much. These were the things most important to her throughout life. She loved and experienced life with her ‘Delaney’ attitude and zest for living. She will be greatly missed.
Thank you for all of your continued support and prayers for our family during this journey.
Amy, Bob, Kevin, and Angel Delaney
Delaney Wilson Wright
April 9, 1996 ~ January 7, 2002
Tuesday, April 9, 2013 10:41 AM CDT
Happy Birthday to you,
Happy Birthday to you,
Happy Birthday to Delaney,
Happy Birthday to YOU!!!!!!!!!!!
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Wednesday, September 26, 2012 11:15 AM CDT
Here is a wonderful poem about some who listens...beautiful.
The Gift of Someone Who Listens
Those of us who have traveled a while
Along this path called grief
Need to stop and remember that mile,
That first mile of no relief.
It wasn't the person with answers
Who told us of ways to deal.
It wasn't the one who talked and talked
That helped us start to heal.
Think of the friends who quietly sat
And held our hands in theirs.
The ones who let us talk and talk
And hugged away our tears.
We need to always remember
That more than the words we speak,
It's the gift of someone who listens
That most of us desperately seek.
Nancy Myerholtz
TCF, Waterville/Toledo, OH
Monday, April 9, 2012 11:54 AM CDT
Information from April 9th on Facebook:
* Amy Wright
April 9 is Delaney's Birthday. She would have been 16, busy with friends, homework, and learning to drive.
As you know, Delaney bravely fought AML leukemia but the leukemia took her away from us.
Wishing Delaney, in heaven, the happiest 16th birthday!!
* Kevin Wright, Carrie Millspaugh Ulvestad, Diane Cunningham and 3 others like this.
* Carol Jackson Kerton
I can only imagine what a beautiful young woman delaney would have become . Love her and think of her often. Hugs to her family today and always. ¢¾
* Carrie Millspaugh Ulvestad
She was such a beautiful girl and we will send birthday prayers to Delaney. Thank you for sharing with us that today is her sweet 16th. And... sending her loving family hugs from all of us in Seattle.
* Marty Foltyn
We miss Delaney every day. I know she is celebrating her Sweet Sixteen in Heaven. Love to you, Bob, Kevin, and Shelley
* Christine Jorgensen
We've been thinking of Delaney all weekend and today, knowing it was her sweet 16 today. We miss her so much and long to see the beautiful young woman she had become. But we know she rejoicing in Heaven already, and we look forward to many celebrations with her when we meet up with her there. Love and hugs and warmest thoughts of comfort for you and family.
* Beth Shehee
So many good thoughts for all of you on this special day... I loved Delaney and think of her often. My little Molly loves kitties and all things girly, she reminds me of that spirited little girl that stole my heart just a few years ago.
* Paula Crosby-Flake
A very sweet picture. So hard to imagine what the future would have held. Hugs to you.
* Marty Foltyn
Love to Angel Delaney on her birthday, April 9 from Uncle Jim, Aunt Marty and Miranda
Saturday, January 7, 2012 3:20 AM CST
Delaney became a beautiful angel in heaven on January 7, 2002 ... ten years ago today.
We love her and miss her every day. Here is what I wrote on her website on January 7, 2002. All of our feelings of love and sadness ten years ago still hold true.
We love you dearly, Miss Delaney.
Bob, Amy, Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday, January 07, 2002 at 10:32 AM (CST)
January 7, 2002 – Heaven has a new angel - Delaney is in Heaven. She is now a beautiful angel in heaven instead of on Earth. She is with God and Grandma Betty (Amy’s Mom) now. She is watching over all those people that she loved here on Earth.
We are sad for the loss of our beautiful child, and will forever be filled with the joy, strength and love that she brought to us. We were so blessed that she was part of our family for 5 ½ years.
Her positive spirit and her way of amazing the doctors remained with her until her final moments here. The infections and leukemia in her body created an imbalance in her body that took her early this morning. She went peacefully, without pain, with Bob and I holding her in our arms.
She loved her family and friends very much. These were the things most important to her throughout life. She loved and experienced life with her ‘Delaney’ attitude and zest for living. She will be greatly missed.
Thank you for all of your continued support and prayers for our family during this journey.
Amy, Bob, Kevin, and Angel Delaney
Delaney Wilson Wright
April 9, 1996 ~ January 7, 2002
Sunday, July 3, 2011 10:37 AM CDT
Heaven has been blessed with a beautiful Angel.
Delaney Wilson Wright
4/9/1996 - 1/7/2002
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Angel Delaney sent us a 'dragonfly' on our patio today. It is about 4 inches in length and a beautiful golden brown color. As most of you know, we live in San Diego, regular house with a regular backyard...but this is the first and only dragonfly we have ever seen. It has been in our backyard for 24 hours.
There is a picture of the dragonfly on the page of pictures...take a look.
Angel Delaney is visiting us. How lucky for us!
Amy
Mom of Angel Delaney, Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Friday, October 29, 2010 12:34 AM CDT
Heaven has been blessed with a beautiful Angel.
Delaney Wilson Wright
4/9/1996 - 1/7/2002
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is a wonderful writing from a TCF member.
I wish they'd understand...
1. I wish you would not be afraid to speak my child's name. My child lived and was important and I need to hear his name.
2. If I cry or get emotional if we talk about my child, I wish you knew that it isn't because you have hurt me; the fact that my child died has caused my tears. You have allowed me to cry and thank you. Crying and emotional outbursts are healing.
3. I wish you wouldn't "kill" my child again by removing from your home his pictures, artwork, or other remembrances.
4. I will have emotional highs and lows, ups and downs. I wish you wouldn't think that if I have a good day my grief is all over, or that if I have a bad day I need psychiatric counseling.
5. I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn't compare it to your loss of a parent, a spouse, or a pet.
6. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me.
7. I wish you knew all of the "crazy" grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, and the questioning of values and beliefs are to be expected following the death of a child.
8. I wish you wouldn't expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be "cured" or a "former bereaved parent", but will forevermore be a "recovering bereaved parent".
9. I wish you understood the physical reactions to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses and be accident-prone all of which may be related to my grief.
10. Our child's birthday, the anniversary of his death, and holidays are terrible times for us. I wish you would tell us that you are thinking about our child on these days, and if we get quiet and withdrawn, just know that we are thinking about our child and don't try to coerce us into being cheerful.
11. It is normal and good that most of us re-examine our faith, values, and beliefs after losing a child. We will question things we have been taught all our lives and hopefully come to some new understanding with our God. I wish you would let me tangle with my religion without making me feel guilty.
12. I wish you wouldn't offer me drinks or drugs. These are just temporary crutches, and the only way I can get through this grief is to experience it. I have to hurt before I can heal.
13. I wish you understood that grief changes people. I am not the same person I was before my child died and I never will be that person again. If you keep waiting for me to "get back to my old self", you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values and beliefs. Please try to get to know the new me - - maybe you'll still like me.
Instead of sitting around and waiting for our wishes to come true, we have a obligation to teach people some of the things we have learned about our grief. We can teach these lessons with great kindness, believing that people have good intentions and want to do what is right, but just don't know what to do with us, or we can sit and wait. I believe our children would want us to help the world understand.
~ Elaine Grier, TCF, Atlanta, Ga
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Heaven has been blessed with a beautiful Angel.
Delaney Wilson Wright
4/9/1996 - 1/7/2002
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Tuesday, April 27, 2010 5:07 PM CDT
My wonderful Aunt Carol in Sacramento is participating in
a Relay for Life for the American Cancer Society.
Link to Aunt Carol's Relay for Life Page is below.
I love you Aunt Carol!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
From Aunt Carol's website:
My Reason to Participate
I am participating in memory of my Goddaughter, Delaney Wilson Wright, who put up a courageous fight in battling Leukemia. Unfortunately, her little body could not fight off this terrible cancer.
I am praying that we find a cure.
Heaven has been blessed with a beautiful Angel.
Delaney Wilson Wright
4/9/1996 - 1/7/2002
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Friday, April 9, 2010 8:22 AM CDT
Happy 14th Birthday to Delaney In Heaven
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Happy Birthday Our Angel
Although you are far away,
I hope you know we miss you,
Each and every day.
We are missing your smiles,
Your laughter and charming ways,
We wish you could be here with us,
To celebrate your special day.
We know that the angels are having
A heavenly party just for you on this day.
We love you more than words can tell,
And think of you every day.
We will sing you Happy Birthday
And send kisses to you in heaven,
We will bring you flowers and balloons,
From Daddy, Mommy, sister Shelley and brother Kevin.
Written by Amy Wright, Mom to Angel Delaney,
Kevin, and Shelley
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
You continue to live in all of our hearts.
Your gift to us all is your zest for life
and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Thursday, January 7, 2010 1:19 PM CST
Angel Delaney,
Happy Angel Anniversary to you! Thank you for the beautiful sunset we saw last night with all the wonderful pinks and purples in the skyl
Love and kisses,
Dad (Bob), Mom(Amy), brother Kevin and sister Shelley
Say My Child's Name
The mention of my child's name may bring tears to my eyes,
But it never fails to bring music to my ears.
If you are really my friend,
let me hear the music of her name!
It soothes my broken heart and sings to my soul!
~Author Unknown ~
Friday, December 25, 2009 9:58 AM CST
We miss you all year around. Christmas and New Years are especially difficult for us.
Every year, we celebrate your life and the fact that we were so lucky to have you in our lives. You are in our hearts every day.
Happy Holidays and a Wonderful New Year to all!!
Bob, Amy, Kevin and Shelley
Wednesday, October 7, 2009 12:05 AM CDT
We went to Maui for Marissa and Trevor's wedding on 09/09/09. Everything was beautiful.
We know you were there with us Delaney,
love and kisses,
Dad, Mom, Kevin and Shelley
________________________________________________
Lyrics from 'Delaney talks to Statues' from Jimmy Buffett
Delaney talks to statues
As she dances 'round the pool
She chases cats through roman ruins
And stomps on big toadstools
She speaks a language all her own
That I cannot discover
But she knows I love her so
When I tuck her 'neath the covers
Father, daughter
Down by the water
Shells sink, dreams float
Life's good on our boat
Delaney draws me pictures
She finger paints the sand
We chase the dogs and hop like frogs
Then I do my bad handstand
She's growing up too fast for me
And asking lots of questions
Some I know the answers to
And some I'm looking for suggestions
Father, daughter
Born by the water
Surf's up, sun's down
Life in a beach town
And some of the things I've seen
Maybe she won't have to see
But there's a lot I want to pass along
That was handed down to me
Delaney talks to statues
As she dances 'round the pool
She chases cats through Roman ruins
And stomps on big toadstools
She speaks a language all her own
Just a little like her mother
And she knows I love her so
When I tuck her 'neath the covers
Father, daughter
Down by the water
Shells sink, dreams float
Life's good on our boat
Monday, June 29, 2009 11:38 AM PST
Here are some wonderful lyrics to a song called Borrowed Angels by Kristen Chenoweth
They shine a little brighter, they feel a little more
They touch your life in ways no one has ever done before
They love a little stronger, they live to give their best
They make our lives so blest, so why do they go so soon?
The ones with souls so beautiful
I heard someone say--
There must be Borrowed Angels, here in this life
They come along, into this world, and make this world bright
But they can't stay forever
Cause they're heaven sent
And sometimes, heaven needs them back again
They reach a little deeper, they see what's in your soul
And even when they leave you know, you'll never let them go
The world's a little richer, just cause they came along
Their love goes on and on, so why do they go so soon?
The ones with souls so beautiful. I heard someone say--
There must be Borrowed Angels, here in this life
They come along, into this world, and make this world bright
They can't stay forever, cause they're heaven sent
And sometimes, heaven needs them back again
How else can you explain why they're here and not here to stay?
I believe there must be, must be
Borrowed Angels, here in this life
They come along, into this world, and make this world bright
But they can't stay forever, cause there heaven sent
And sometimes heaven needs them back again.
And sometimes heaven needs them back again.
___________________________________________________
Love to everyone,
Bob, Amy, Kevin, Shelley, and Angel Delaney
Sunday, May 11, 2008 9:54 AM CDT
Happy Mother's Day from Heaven
Dear Mr. Hallmark,
I am writing to you from heaven,
and though it must appear
A rather strange idea,
I see everything from up here.
I just popped in to visit,
your stores to find a card
A card of love for my mother,
as this day for her is hard.
There must be some mistake I thought,
I saw every card you could imagine
Except I could not find a card,
from a child who lives in heaven.
She is still a mother too,
no matter where I reside
I had to leave, she understands,
but oh the tears she's cried.
I thought that if I wrote you,
that you would come to know
That though I live in heaven now,
I still love my mother so.
She talks with me, and dreams with me;
we still share laughter too,
Memories are our way of speaking now,
would you see what you could do?
My mother carries me in her heart,
her tears she hides from sight.
She writes poems to honor me,
sometimes far into the night
She plants flowers in my garden,
there my living memory dwells
She writes to other grieving parents,
trying to ease their pain as well.
So you see Mr. Hallmark,
though I no longer live on earth
I must find a way to remind her
of her wondrous worth.
She needs to be honored,
and remembered too
Just as the children of earth will do.
Thank you Mr. Hallmark,
I know you'll do your best
I have done all I can do;
to you I'll leave the rest.
Find a way to tell her,
how much she means to me
Until I can do it for myself,
when she joins me in eternity.
________________________________________
Delaney is Our Little Miss Magic ... A true and precious gift. During Delaney’s brief life, she provided genuine inspiration, joy, and hope to others.
Delaney's beautiful, bright eyes, her gorgeous smile, and contagious giggle captured the hearts of many. She radiated like a star, like love that transcends all time. It is Delaney's song inside each heart that never stops singing. In this world, we are never alone, for we are all connected by the heartstrings of her song.
Sunday, March 23, 2008 12:21 AM CDT
Happy Easter!!!
Thinking of you on this very special day. Our bunny, Brownie, is in heaven with you. I know you will take good care of him. Love and kisses!!!!!
Our Precious Delaney
She brings sunshine to your life,
She shares her smile to brighten your days,
She will capture your heart and keep it
With her warm endearing ways.
She is our precious Delaney,
With angel wings in heaven above,
Who will charm your life and memories,
And fill you heart with love.
love,
Dad, Mom, Kevin and Shelley
Thursday, February 14, 2008 1:40 PM CST
Our Precious Delaney
She brings sunshine to your life,
She shares her smile to brighten your days,
She will capture your heart and keep it
With her warm endearing ways.
She is our precious Delaney,
With angel wings in heaven above,
Who will charm your life and memories,
And fill you heart with love.
Happy Valentine’s Day!!!
love,
Dad, Mom, Kevin and Shelley
Monday, January 7, 2008 6:20 PM CST
January 7, 2008
Delaney,
You have graced heaven for 6 years. We miss you in our hearts and in our lives daily. I know that you have brightened heaven with your terrific smile.
love,
Dad, Mom, Kevin and Shelley
_____________________________________
Thursday, December 20, 2007
I was running errands in our local shopping center today. Sitting outside the Jamba Juice store among his friends was Trevor Hoffman. For those of you that are not San Diego based, Trevor Hoffman is a well known pitcher for the San Diego Padres.
While Delaney was in San Diego Children's Hospital, several team members from both the Padres and the Chargers came and visited the in-patient children. The team members go into the playroom or individual rooms and spend a few minutes of their precious time with the children. They often leave a special Padres or Chargers Teddy Bear.
Trevor was the Padre team member who came into Delaney's room. He brought her a bear dressed in a Padres team shirt. He also spent several minutes just talking to her and making her feel like he came to see her that day. She was delighted to meet him and gave him a big hug and a beautiful smile.
She became an angel in heaven a few months later. Kevin, Delaney's brother, now has the Padres Teddy Bear, known around here as the Trevor Hoffman Bear.
Today, upon seeing Trevor, all the memories came right back. In a gentle way, I asked Mr. Hoffman if he had a minute to allow me to tell him how much his visit to Delaney made a difference in her life and in our families lives. He was kind and listened to my story. He then gave me a hug and thanked me for letting him know that his and his team volunteer work makes a difference in the lives of others. He was thoughtful to ask me if I had additional children and asked how they were doing. I shared with him that Delaney's brother Kevin has the Trevor Bear. He smiled and said, Delaney is in all of our hearts today.
What we do for our loved ones and others is the greatest gift of all,
Amy Wright
Proud Mom of Angel Delaney, Kevin, and Shelley
Monday, August 20, 2007 11:57 AM CDT
- September is Childhood Cancer Awareness Month. The ribbon for Childhood Cancer is a Gold.
This is a picture of Delaney when she was 3 1/2. I scanned it in so the picture quality is not the best. It shows her personality and joy.
_______________________________________________
Here is a poem from Delaney's wonderful Aunt Carol,
Afterglow
I'd like the memory of me to be a happy one.
I'd like to leave an afterflow of smiles when life is done.
I'd like to leave an echo whispering softly down the ways.
Of happy times and laughing times and bright and sunny days.
I'd like the tears of those who grieve, to dry before the sun.
Of happy memories that I leave when life is done.
- Author Unknown
_______________________________________________
We know that Delaney is gracing heaven as beautifully as she did here on earth. We miss her so! She continues to live in our hearts.
Delaney is our 'Little Miss Magic.'
Love,
Bob, Amy, Kevin and Shelley
Wednesday, May 23, 2007 1:17 PM CDT
This picture is from Christmas 2000, 5 weeks before diagnosis. Delaney always had such gorgeous hair and enough for 3 people. Also checkout the painted nails. What a beautiful princess!
________________________________________________________
Our Delaney is loved and missed by so many here on earth. I know she is in heaven with her Grandmother and Grandfather and many other angels have joined her due to cancer. Our hope is that Delaney is gracing heaven as beautifully as she did here on earth. We miss her so! She continues to live in our hearts.
________________________________________________________
This is the song Jimmy Buffett wrote for his daughter, Delaney. We loved the name and the song (we are Jimmy Buffett fans.)
~~ Delaney ~~
Delaney talks to statues
As she dances 'round the pool
She chases cats through roman ruins
And stomps on big toadstools
She speaks a language all her own
That I cannot discover
But she knows I love her so
When I tuck her 'neath the covers
Father, daughter
Down by the water
Shells sink, dreams float
Life's good on our boat
Delaney draws me pictures
She finger paints the sand
We chase the dogs and hop like frogs
Then I do my bad handstand
She's growing up too fast for me
And asking lots of questions
Some I know the answers to
And some I'm looking for suggestions
Father, daughter
Born by the water
Surf's up, sun's down
Life in a beach town
And some of the things I've seen
Maybe she won't have to see
But there's a lot I want to pass along
That was handed down to me
Delaney talks to statues
As she dances 'round the pool
She chases cats through Roman ruins
And stomps on big toadstools
She speaks a language all her own
Just a little like her mother
And she knows I love her so
When I tuck her 'neath the covers
Wednesday, May 23, 2007 11:10 AM CDT
Our Delaney is loved and missed by so many here on earth. I know she is in heaven with her Grandmother and Grandfather and many other angels have joined her due to cancer. Our hope is that Delaney is gracing heaven as beautifully as she did here on earth. We miss her so! She continues to live in our hearts.
________________________________________________________
This is the song Jimmy Buffett wrote for his daughter, Delaney. We loved the name and the song (we are Jimmy Buffett fans.)
~~ Delaney ~~
Delaney talks to statues
As she dances 'round the pool
She chases cats through roman ruins
And stomps on big toadstools
She speaks a language all her own
That I cannot discover
But she knows I love her so
When I tuck her 'neath the covers
Father, daughter
Down by the water
Shells sink, dreams float
Life's good on our boat
Delaney draws me pictures
She finger paints the sand
We chase the dogs and hop like frogs
Then I do my bad handstand
She's growing up too fast for me
And asking lots of questions
Some I know the answers to
And some I'm looking for suggestions
Father, daughter
Born by the water
Surf's up, sun's down
Life in a beach town
And some of the things I've seen
Maybe she won't have to see
But there's a lot I want to pass along
That was handed down to me
Delaney talks to statues
As she dances 'round the pool
She chases cats through Roman ruins
And stomps on big toadstools
She speaks a language all her own
Just a little like her mother
And she knows I love her so
When I tuck her 'neath the covers
Wednesday, February 14, 2007 4:04 PM CST
Happy Valentine's Day!!!
This Valentine is not of the ordinary kind,
Its still filled with love...and blessings inside;
But mine has to be sent on the wings of love...
You see its destination is the Heavens above.
The message is the same as your valentine,
"I love you...my sweet precious child of mine;
My love is still deeper than the ocean is blue,
And its sent with hugs and kisses...from me to you."
Love,
Mom, Dad, Kevin and Shelley
Monday, February 12, 2007 2:48 PM CST
Delaney - A True Princess
Princesses look beautiful but stand tough -- think Cinderella, sweeping fireplaces and shrugging off her stepsisters' disdain; think Sleeping Beauty, poisoned by the evil queen but defeating her in the end.
By all accounts, Delaney Wilson Wright deserves top rank in the Princess Hall of Fame
But that's always the way with true princesses -- they dazzle us, they find their way into our hearts, and then they move on, taking their sunshine but leaving the memory of her sweet smile.
Sunday, January 7, 2007 7:09 PM CST
This is Delaney's 5th Angel Anniversary
Delaney is a beautiful star,
She taught us many things.
To be caring, loving and giving,
and be angels without wings.
Delaney,
You continue to live in all of our hearts. Your gift to us all is your zest for life and the incredible smile you shared endlessly.
We love you,
Dad, Mom, brother Kevin and sister Shelley
Monday, December 25, 2006 11:22 AM PST
Merry Christmas Delaney!!!!
Delaney was a child that touched the world and made it a better place. She brought sunshine and joy to all she met with the smile upon her face. No one could know the hearts she'd touch with her joy , compassion, and love. But all who knew Delaney could easily see she was a gift to all who knew her.
Delaney was a child filled with joy and love, she was a friend to all she knew. She was a treasure: beautiful, giving and kind, witty and funny too. Her smile could brighten the darkest days. Her laughter could melt the coldest heart, touching both young and old.
We miss her dearly, think of her often and treasure the memories. She brought love and joy to all.
We hope your Holidays are joyful,
Delaney's family - Dad, Mom, Kevin and Shelley
______________________________________________
Precious Delaney
Precious Delaney, 5years old.
Spirit of magic, heart of gold.
You shared your courage, you made us see,
How wonderful life can truly be.
In our hearts forever you'll stay,
Your laugh, smile, and delightful ways.
The butterfly kisses every night,
With you in our hearts, all will be right.
You are now in heaven with the angels above,
And never forget you have our love.
We know you are watching over all of us,
Your butterfly visits are loving and precious.
Saturday, November 25, 2006 2:01 PM CST
We just got back from our wonderful Thanksgiving Disneyland Trip with the Kertons (Michael, Carol, Aaron, Marissa, Caitlin and Dru.) We had a great time and enjoyed the time together.
Delaney came to us as a butterfly while we were all in line at the Thunder Mountain Ride. The weather was beautiful and there were many flowers around. But we only sawone butterfly in the two days we were there. The butterfly stayed on the flower over 1 minute (which is a long time for a butterfly.) Long enough for all of us to get our cameras out and realize just who was behind the visit.
Thank you Delaney for visiting us and reminding us what to be thankful for during Thanksgiving.
Friday, November 10, 2006 11:16 AM CST
You are in our hearts to show us
The things that are worthwhile.
You've done so with your usual grace
And with your beautiful smile.
You've helped us see what matters
Connections to family and friends.
You have shown us this while you were
here and continue to from heaven.
Your butterfly spirit still flys
Your ballerina dance still does a twirl,
You live with us in our hearts
You give us this, you are an amazing girl.
______________________________________________________
Your gift to us continues to live in our hearts each day. There are many new cancer angels coming to heaven. Please help them and their families through their difficult times.
We will be celebrating Thanksgiving with Aunt Carol, Uncle Mike, Aaron and Marissa and Drew and Caitlin.
We all love you so much,
Bob, Amy, Kevin and Shelley.
Monday, January 9, 2006 9:06 AM CST
Delaney, Our Beautiful Angel
Delaney is a beautiful star,
she taught us many things.
To be caring, loving, and giving,
and be angels without wings.
Delaney, you continue to live in all of our hearts. Your gift to us all is your zest for life and the incredible smile you shared endlessly. You inspire us to continue on each day.
Here are wonderful words for a life such as Delaney's...
SHE'S A BUTTERFLY By: Martina McBride
She remembers when she first got her wings
And how she opened up that day
she learned to sing
Then the colors came, erased the
black and white
And her whole world changed
when she realized
[Chorus:]
She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly
Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it's almost magical
It makes you wanna cry, she's so beautiful
[Chorus]
God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her strength to fly
Never let her wings touch the ground
[Chorus]
God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her the strenght to fly
Never let her wings touch the ground
We love you Delaney,
Your Dad, Mom, brother Kevin, and sister Shelley
Monday, September 26, 2005 10:20 AM CDT
Shelley is in 1st grade this year. Delaney would have been in 4th grade this year at the same school. When Delaney was in Kindergarten, she made friends with a girl named Madeleine. Madeleine and Delaney would send notes and pictures to each other. It was her 'new' Kindergarten friend, as she already knew many of the other girls in class.
This morning I walked Shelley to school and she lined up as usual. Her classmate and 'new' 1st grade friend, Marina, came up to me and said, "I know that you are Delaney's Mom." I said, "Yes, I am...How do you know that I am Delaney's Mom?" She said, "Madeleine is my sister and she knows that Shelley is Delaney's sister. She is glad that Shelley and I are friends. Madeleine sleeps with her Delaney bear." (The 'Delaney bear' is a special bear with an angel heart that I sewed on each bear and gave to the kids on what would be Delaney's 6th birthday.)
It just warms my heart that these 9 and 6 year old girls are touched by Delaney and wanted to share that with me.
I dearly miss who Delaney was and who she would become as she experienced life.
Amy Mom to Angel Delaney, Kevin, and Shelley
Here are wonderful words for a life such as Delaney's...
SHE'S A BUTTERFLY By: Martina McBride
She remembers when she first got her wings
And how she opened up that day
she learned to sing
Then the colors came, erased the
black and white
And her whole world changed
when she realized
[Chorus:]
She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly
Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it's almost magical
It makes you wanna cry, she's so beautiful
[Chorus]
God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her strength to fly
Never let her wings touch the ground
[Chorus]
God bless the butterfly,
give her the strength to fly
Never let her wings touch the ground
God bless the butterfly,
give her the strenght to fly
Never let her wings touch the ground
We love you Delaney,
Your Dad, Mom, brother Kevin, and sister Shelley
Sunday, July 3, 2005 4:37 PM CDT
Happy 13th Birthday to Kevin!!!
Wishing a happy birthday
to a great brother like you,
Hope this day be a happy one
may all your wishes come true!
----------------------------------
About a week ago, Kevin tried out to be a member of the ball-person team at the Acura Classic Tennis Tournament (which is held at the La Costa Resort here in San Diego from July 30 - August 7.) The ball-person team consists of 120 young men and women who have experience in tennis and are selected based on their ability to work in a team in a quick and quiet manner. He was waiting for a letter to hear if he 'made the ball-person team.' Even after the tryout, he commented that he really wanted to make the team. He really understood the game and the need for good ball-team members.
Saturday, July 2, the day before his 13th birthday, he received the letter from the Acura Classic. He made the ball-person team!!!!! I have not seen him so excited about an activity in a while.
Happy Birthday to Kevin and thank you to all of you who are a part of our lives and who have supported us throughout our journeys. Kevin is traveling down this journey with all of you in his 'court.'
Amy
Mom to Angel Delaney, Kevin, and Shelley
Sunday, May 8, 2005 3:37 AM CDT
YOUR MOTHER IS ALWAYS WITH YOU...
Your mother is always with you...
She's the whisper of the leaves
as you walk down the street.
She's the smell of bleach
in your freshly laundered socks.
She's the cool hand on your brow
when you're not well.
Your mother lives inside your laughter.
She's crystallized in every tear drop.
She's the place you came from,
your first home...
She's the map you follow
with every step that you take.
She's your first love
and your first heart break...
and nothing on earth can separate you.
Not time, Not space...
Not even death...
will ever separate you
from your mother...
You carry her inside of you...
~Author Unknown~
Happy Mothers Day to you!
Amy, Delaney's Mom
Friday, January 7, 2005 7:33 PM CST
Delaney,
We miss you each and every day of our lives. We wish you were here to brighten our day with your beautiful smile. Our love for you has grown and kept our grief at bay.
_______________________________
"I BELIEVE" (Lyrics from the song)
Every now and then soft as breath upon my skin
I feel you come back again
And it’s like you haven’t been gone a moment from my side
Like the tears were never cried
Like the hands of time are holding you and me
And with all my heart I’m sure we’re closer than we ever were
I don’t have to hear or see, I’ve got all the proof I need
There are more than angels watching over me
I believe, I believe
That when you die your life goes on
It doesn’t end here when you’re gone
Every soul is filled with light
It never ends and if I’m right
Our love can even reach across eternity
I believe, I believe
Forever, you’re a part of me
Forever, in the heart of me
And I’ll hold you even longer if I can
The people who don’t see the most
Say that I believe in ghosts
And if that makes me crazy, then I am
‘Cause I believe
There are more than angels watching over me
I believe, I believe
__________________________
Enjoy your angel 'anniversary' in heaven with all the other beautiful angels.
We feel your love from heaven,
Dad, Mom, Kevin, Shelley and Cody
Saturday, December 25, 2004 10:00 PM CST
I found the following poem on the Bridge of Dreams site and wanted to share with you. It describes exactly how I feel about Delaney.
I thought of you with love today
but that is nothing new.
I thought about you yesterday,
and the day before that too.
I think of you in silence,
I often say your name.
But all I have is memories,
and your picture in a frame.
Your memory is my keepsake,
with which I’ll never part.
God has you in his keeping,
I have you in my heart.
I shed tears for what might have been
a million times I’ve cried.
If love alone could have saved you,
you never would have died.
In life I loved you dearly,
in death I love you still.
In my heart you hold a place,
no one could ever fill.
It broke my heart to lose you,
but you didn't go alone.
For part of me went with you,
the time God took you home.
Author Unknown
Sending you lots of love and kisses,
Dad, Mom, Kevin and Shelley (and Cody, too!)
Saturday, December 25, 2004 0:22 AM CST
Merry Christmas to you Delaney,
Here is a poem for you today...
I See You In My Everyday
I see you in the peace of night
I see you in the bright sunlight.
You're in the breeze that gently blows
You are the calm of fallen snow.
Magnificent are wings that fly
I see you in the eagle's eye.
You're in the turquoise of the sea
I can even see you in parts of me.
I smell you in the lilac trees
I hear you in the bumblebees.
You are the colors of the fall
You are the mountains soaring tall.
I feel you in the summer storm
And in the springtime nice and warm.
You are the blossoms on the branch
You're in the firefly's evening dance.
I remember you in all good things
In the wondrous treasures nature brings.
Your memory will forever be
The greatest gift you gave to me.
Lauren Waters
We love you,
Dad, Mom, Kevin and Shelley
Friday, September 3, 2004 4:13 PM CDT
Here is a poem that one of my online friends sent to one of the online groups to which I belong. This poem really says how I feel quite nicely.
We are connected,
My daughter and I, by
An invisible cord
Not seen by the eye.
It's not like the cord
That connects us 'til birth
This cord can't be seen
By any on earth.
This cord does it's work
Right from the start.
It binds us together
Attached to my heart.
I know it's there,
Tho no one can see
This invisible cord
From my daughter to me.
The strength of this cord
Is hard to describe
It can't be destroyed,
It can't be denied.
It's stronger than any cord
One could create
It withstands the test
Can hold any weight.
And though you're gone
Though you're not here with me,
The cord is still there
Though no one can see.
It pulls at my heart,
I am bruised...I am sore,
But this cord is my lifeline
As never before.
I am thankful that God
Connects us this way
A mother and child
Death can't take it away!
- Unknown
Delaney, we continue to miss you and live with your spirit among us.
Love to all,
Bob, Amy, Kevin and Shelley
Wednesday, June 30, 2004 3:11 AM CDT
Delaney is in our hearts and never forgotten.
An angel on earth and now an angel in heaven.
She is our "Little Miss Magic."
__________________________________________
My Angel, My Angel
My Angel, My Angel
Why have you gone?
I needed you here
For all the new dawns.
You loved to laugh
You hid your pain.
I loved to be with you,
But to no gain.
When I next see you
I'll not refrain.
From holding you close
And never let go again.
Author Unknown
________________________
We love you and think of you every day, our dear Delaney.
love and kisses,
Dad, Mom, Kevin, and new sister Shelley (4 1/2, came into our family in March 2004 through adoption.) A picture of Kevin and Shelley is on the photo page.
Friday, April 9, 2004 1:06 AM CDT
Happy Birthday In Heaven
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Happy Birthday Our Angel
Although you are far away,
I hope you know we miss you,
Each and every day.
We are missing your smiles,
Your laughter and charming ways,
We wish you could be here with us,
To celebrate your special day.
We know that the angels are having
A heavenly party just for you on this day.
We love you more than words can tell,
And think of you every day.
We will sing you Happy Birthday
And send kisses to you in heaven,
We will bring you flowers and balloons,
From Daddy, Mommy, new sister Shelley and brother Kevin.
Written by Amy Wright, Mom to Angel Delaney
Kevin and Shelley
Friday, February 14, 2004
To Sweet Delaney in Heaven:
A Special Valentine
I miss the feel of your hugs,
The smile on your face,
Hearing your sweet voice,
Living among your grace.
Your place is now in heaven,
You heart is with mine,
You will always be
My special Valentine.
We love and miss you every day,
Dad, Mom, and brother Kevin
Tuesday, January 6, 2004 12:51 AM CST
Our beautiful Delaney has graced heaven for two years.
We miss her love and cheery ways,
With her we spent our happiest days,
In memory we see her the same,
As long as we live, we'll cherish her name.
Delaney Smiles
Delaney dances as a ballerina
on tiny dancing toes.
A child too young and innocent
to have faced so many woes.
But all the while Delaney smiles,
her spirit shines so bright.
Her strength and courage in life
keep us on the path thatÂ's right.
Delaney is a beautiful star,
she taught us many things.
To be caring, loving, and giving,
and be angels without wings.
Written by her Mom, Amy Wright
Wednesday, December 24, 2003 11:18 PM CST
Merry Christmas From Heaven
I still hear the songs,
I still see the lights,
I still feel your love
on wintery nights.
I still share your hopes
and all of your cares.
I'll even remind you
to please say your prayers.
I just want to tell you
you still make me proud.
You stand head and shoulders
above all the crowd.
To my family and friends
please be thankful today.
I'm still close beside you
in a new special way.
I love you all dearly,
now don't shed a tear.
Cause I'm spending my
Christmas with Jesus this year
Wednesday, September 24, 2003 9:01 AM CDT
Delaney Smiles
Delaney dances as a ballerina
on tiny dancing toes.
A child too young and innocent
to have faced so many woes.
But all the while Delaney smiles,
her spirit shines so bright.
Her strength and courage in life
keep us on the path thatÂ’s right.
Delaney is a beautiful star,
she taught us many things.
To be caring, loving, and giving,
and be angels without wings.
Written by her Mom, Amy Wright
Because beyond a shadow of a doubt, there have been gifts given me from Delaney. Gifts like no other. Little nuggets of truth, of heroism, of the purest love I have ever known. Purified by fire, I guess. LIKE GOLD.
We who have this gold are blessed and cursed.... the love, the gifts, the loss, the pain.... and yet there is no power in heaven or on earth that can take it away from us.... nor would we let them. We just learn to live life differently. It's not the same and never will be, without Delaney in it.
Wednesday, April 9, 2003 12:35 AM CDT
Happy Birthday to Delaney!!!
To celebrate Delaney’s birthday, we are taking beanie baby cats to the children that in Children’s Hospital Oncology area. We know how much she loved her ‘kitties’ and how she loved to share and make others smile. Well, this morning, Kevin picked a cat out of the basket and wanted it for himself. The cat was helping him study for a test he has today. Then he noticed a neighborhood cat in our backyard. This is the first time this cat has come into our backyard. Kevin went into the dining room to watch the cat and the cat came right up to the window. Guess what the cat looked like…just like the beanie cat that Kevin had picked out of the basket. And the backyard cat had beautiful green eyes.
Yes, Delaney, we received your birthday message today. Thank you for sending it to us. We wish you a very happy birthday in heaven. Celebrate with all of your new angel friends.
Ever Near
She is away, yet ever near,
Her presence fills each day.
Her voice,
her smile are everywhere,
A memory away.
And though she is
no longer seen,
By family and friends;
She lives because she was
dearly loved,
And love can never end.
Delaney was outgoing, always had a smile to share and a flare for drama. She was delightful and handled her leukemia with the grace of one much older. She inspired all who knew her to live better, more meaningful lives.
Love to you from the hearts of Angel Delaney's family,
Bob, Amy and Kevin
Tuesday, February 14, 2003 3:31 PM CST
Delaney, you are forever our Special Valentine!! Much love to you and your friends in heaven.
Love and kisses,
Dad, Mom, and brother Kevin
A Special Valentine
A touch of your hand
A smile on your face
Another time, another place
You were my girl
I was your mom
Together we met
The world head on
Death cannot dim
The memories so fine
Your place is there
This place is mine
But you will always be
My special Valentine.
------------
Blowing kisses to Heaven
That's what I can do
Everytime I want to say
How much "I love you."
Blowing kisses to heaven
I know that you love me
I am so blessed and so thankful
That God sent you to our family.
Everyone that met you
Claimed you as their own
Gentle, so caring, so giving, so kind,
A truest gift wrapped from God's heart to mine.
Now you are receiving
Blessings so deserved
And everytime I think of you
I'll blow kisses to heaven
My heart to yours!
Tuesday, December 31, 2002 at 02:00 PM (CST)
Delaney continues to live in all of our hearts and inspires us all to continue on each day. Her gift to us all is her zest for the day and her incredible smile she shared endlessly. She lived with grace and courage; she inspires all who knew her.
Here are a few stories from our lives...
The holidays have been very different for us this year (as you can all imagine.) For Thanksgiving, we decided to visit Disneyland and California Adventure with our wonderful friends, the Kertons, from Sacramento. Marissa and Caitlin are Kevin's big sisters. Marissa was unable to join us as she was studying for finals and finishing a big project for college. We did connect with her by phone.
We missed Delaney being with us, but she was in our thoughts and in our conversations.
We enjoyed the festive atmosphere at the Disney parks and the rides. We treated ourselves with lunch at the Blue Bayou Restaurant.
Kevin and Caitlin loved the 'California Screamin' roller coaster and tried it many times. Carol and Amy also enjoyed it. Bob and Michael were the official photo takers. While going on another roller coaster, there was a family that needed an older child to sit with a young girl. Caitlin offered to join the girl on the ride. Guess what the youg girl's name is...yes, you are right, it's Delaney. Our Delaney always finds a way to tell us she is with us.
Just before Christmas, the Wright family went ice skating with the Epstein family. It was a bit chaotic putting on skates, finding gloves and the locker for our shoes. I (Mom) found a place to sit and help Kevin with his skates. When I went to gather my things, I noticed on the bench next to me was a perfect yellow daisy with one petal picked and moved slightly away from the rest. It was telling me...Mom, I am here with all of you, connected in a different way.
We continue to find 'pennies' from heaven in our lives. We hope that the New Year will bring you joy, peace and some 'pennies' from heaven.
Angel Delaney's Family, Bob, Amy and Kevin, age 10
Friday, October 25, 2002 at 11:24 AM (CDT)
Pink Makes Me Fly
Pink is my favorite color
This color fills my wings
Just a touch within the sky
Makes me want to twirl and sing.
When you are thinking of me
Lighting the way with my smile
Remember I am never far away
Sending you my love from the sky.
Pink, the color that makes me fly.
Delaney continues to live in all of our hearts and inspires us all to continue on each day. Her gift to us all is her zest for the day and her incredible smile she shared endlessly. She lived with grace and courage; she inspires all who knew her.
We are putting together a memory album of Delaney. We would appreciate it greatly for all of you to join in with us in creating this album. All you need to do is put a page together with your stories, pictures or thoughts of Delaney on a 8 1/2 by 11 piece of paper (white or a light dusty rose pink) and send it to us at the following address.
Thank you all for your continued support and blessings. Our love and good wishes go out to you all,
Angel Delaney's Family, Bob, Amy and Kevin, age 10
Note: Clofarabine, the drug that Delaney was on in Texas is now is a Phase II trial. This means the drug is working in children and on its way to help other children fight this disease. We know that she helped in making this possible for others to fight their battle against leukemia.
Thursday, August 15, 2002 at 01:12 PM (CDT)
Delaney continues to live in all of our hearts and inspires us all to continue on each day. Her gift to us all is her zest for the day and her incredible smile she shared endlessly. She lived with grace and courage; she inspires all who knew her.
Here are a few stories from our lives...
A family friend gave us two front-row tickets to the Acura Tennis Classic, held in La Costa (15 min from home.) They were unable to use the tickets and thought Kevin would enjoy it. I (Mom) love tennis also and was thrilled to join him. This was his first time attending a professional tennis tournament (at the grand old age of 10.)
He was a wonderful companion, a perfect gentleman, and a respectful tennis fan. He enjoyed reading the program, watching the match, the ball boys and girls, and even asked for autographs front the players. (Of course, the fact that he is adorable and that we were sitting just behind the players helped.) The manager of the ball boys and girls came over to us, gave him a practice tennis ball and inquired if he would like to try out to be a ball boy next year. He was thrilled and told his coach the next week. He meets the qualifications (age and tennis knowledge) and is hoping to be on the 'ball boy' team next year.
As we were sitting there in the first row, during one of the breaks, a small monarch type butterfly landed on our program, which was placed on the empty seat next to us. The butterfly was gold and black in color and beautiful. The butterfly stayed for 2-3 minutes, then flew around us twice and landed again. Then left after another minute. Kevin and I were speechless; both knowing this was a 'Hello' from our Angel Delaney. This was the only butterfly that we saw the entire time we were there.
This summer, Kevin wanted to be in Delaney's room. We asked him why did he want to change rooms. He said, "Because that room is where Delaney lived and slept." He is a caring, sensitive brother. So we had both kids rooms painted and he moved into her old room. Many thanks to Christine and Linda for their help in this effort. For Kevin's old room, we painted it a new color (not Delaney's previous color) and put new linens on the bed. After working in the room, I came downstairs and opened the door to the back patio to get some fresh air into the house. There, just in front of the door, on the ground I found a perfect feather from a bird. I have never found any feathers anywhere near our house.
We also find 'pennies' from heaven around the house, in our cars, in our lives. Hoping this summer is bringing you sunshine, smiles, and carefree days.
Angel Delaney's Family, Bob, Amy and Kevin, age 10
Tuesday, June 18, 2002 at 01:56 PM (CDT)
Kevin is writing this with inspiration from Angel Delaney (OK, and a little help from Mom.)
Delaney continues to live in all of our hearts and inspires us all to continue on each day. Her gift to us all is her zest for the day and her incredible smile she shared endlessly. She brought so much joy to everyone she met.
The Delaney Wright Citizenship Award: Delaney and I attended the same school this year, Solana Highlands (Delaney in Kindergarten and Kevin in Third grade.) Her Kindergarten teacher, the principal, and Mom and Dad established the Delaney Wright Citizenship Award, which will be given on an annual basis to the most deserving student. The winner of this award is a 6th grade girl who thinks of others and enjoys helping them without thinking of her self first.
Dad and Mom presented the first annual Delaney Wright Citizenship Award last week. It was an emotional event, but Delaney's spirit assisted them in getting through this day as well as many others. I was there to watch. We like to go visit her and decorate her site. She is near a lake and we go and feed the ducks. I like to put pinwheels on her site and she makes them spin fast for us when we talk to her.
We also went to see her Kindergarten class play, Peter and the Wolf. Delaney was going to be a cat (of course.) She loved this play and came to see her friend Alanna as the cat last year. This year the play was dedicated to Delaney. The kids were all great. Mom even helped another mom design and build the sets for the play.
Kevin is really enjoying tennis this year. Every week, he has 30 minutes of private lessons with his coach and then a 1½-hour group lesson. With his great stamina, he can play for two hours easily. His favorite shot is the volley (where the ball does not bounce before hitting it), and he is really picking up the top spin and drop shot (that must be his Becker side coming through.)
Dad and Mom are looking into lessons to keep up with me. When my parents practice with me for a couple of hours, they are exhaustedly walking toward the water/keys and I ask, "Are we taking a break?" Yes, son, we are taking a break...until tomorrow! Mom says, "His stamina is only outdone by his ability to get to and incredibly return shots like he does."
I also love roller coasters and would like to ride all of the top steel roller coasters in the U.S. Mom likes roller coasters, but she says that some of these new rides are designated for Uncle Roy to ride with me. Dad likes to make sure the camera and other stuff is safe and he has the responsibility to watch this equipment carefully, therefore, he cannot possibly go on the coaster rides.
At this point, I plan to be a Tennis Pro or a Roller Coaster Engineer. Of course, my parents would not want to limit my enthusiasm for either goal. Tennis can lead you to world travel and $several$ other $benefits$$$...or...a college $scholarship$$!
Looking forward, we are all looking forward to an enjoyable summer ...now, who wants to go on the X-Extreme Roller Coaster with me??? (This is the coaster at Six Flags Magic Mountain where the seats rotate or spin around as the roller coaster is going around the track. Also, just to let you know...I want to sit in the front row!!)
Kevin, age 9 ½, proud brother to Angel Delaney, son to Bob and Amy Wright
Tuesday, April 09, 2002 at 06:27 PM (CDT)
Today is Delaney's 6th birthday (first one she is celebrating in heaven!) We had a party for her in her Kindergarten class. I am sharing with you a poem from Delaney to her friends in kindergarten.
We miss her so much in our lives. She was loved dearly by all. We would also like to thank all the people that signed Delaney's guestbook on her website, sent an email, gave us a call, and continue to think about our Angel Delaney.
Love to all, Bob, Amy, Kevin and Angel Delaney
----------------
To All My Friends In Kindergarten
I'll always be in Kindergarten
my heart is here with you
I'll never see another grade
my days were just too few.
I'll sit with you in class
and watch you learn to read
when you have time in the kiva
right here is where I'll be.
Ms. von Mohlenhoff made me smile
she'll do the same for you
and when you are feeling alone
your new friends are there for you.
So, I'll look down at you from heaven
in the sun you'll see my eyes
the playground is for fun and sharing
and to see humming birds fly.
And when you think of all these things
you know that love is near
I have a fun playground up here
and many new friends to share.
Love,
Angel Delaney
Monday, March 04, 2002 at 03:52 PM (CST)
Many have asked how we are doing, so here is an update on our family, followed by a wonderful poem I found on the Internet.
Kevin is doing great in the third grade. This has been a great year for him. He has made some buddies in class. He continues to enjoy the tennis classes. Mom and Dad try to practice with him on the weekends. Kevin can play for two hours and still have energy left over. Being good parents, we don’t want him to practice TOO much at once, so we call it quits after two hours. (Yes, we are exhausted.) The kid has an amazing way of running all over the court and returning the shots. As Bob recently said, “Why are all the balls on my side of the court?”
Kevin also likes winter sports…soon, we are on our way to Northern California where he will be snow boarding with his cousin Caitlin. Bob and Uncle Mike will try to keep up with them. (Aunt Carol and Amy will be checking out the deals in the outlet mall.)
Bob has been traveling to the East Coast with work. He has had opportunity to visit family on the coast of New Jersey and see his niece and nephew (Krissy and Danny) who seem to be getting taller every time we see them.
Amy is working as a technical writing consultant for the company she worked for before Delaney’s diagnosis. They never replaced her (is that possible?), so she has plenty to keep her busy. She is keeping the hours down to 20 per week. This still gives her time to spend time with Kevin and get some projects done around the house (OK, start some projects around the house.) Amy is starting to attend some bereavement groups to help in this process.
Delaney’s site is decorated with flowers, valentines, hearts, and fairies (to watch over her.) She is in a very peaceful place. We think of her often and miss her dearly.
As we go through our daily lives, we have found ways in which she sends us messages or reminders of her. Some days these reminders are easier to experience than others, but they are always welcome.
If something during your day reminds you of Delaney, please take the time and share it with us through the guestbook on her website (address below.) In the meantime, here is a wonderful poem from us to all of you.
REMEMBERING
by Elizabeth Dent
Go ahead and mention my child.
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying on the inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent,
Pretending she didn't exist.
I'd rather you mention my child,
Knowing that she has been missed.
You asked me how I was doing.
I say "pretty good" or "fine".
But healing is something ongoing.
I feel it will take a lifetime.
Amy, Bob, Kevin, and Angel Delaney
Delaney's website: www.caringbridge.com/ca/delaney
The Delaney Wright Memorial Fund has been set up to make a difference to the lives of the children fighting cancer. If you would like to donate to the Delaney Wright Memorial Fund, send it to Children’s Hospital Auxiliary, Delaney Wright Memorial Fund, 3020 Children’s Way, MC 5013, San Diego, CA 92123-4282. Please include “Delaney Wright Memorial Fund” on the check.
Wednesday January 30, 2002 4:53 PM CST
Thank you to all who attended Delaney's Celebration of Life Memorial Service. I am thankful for all the wonderful people that were able to be there. There was much love and support for our family. The church was filled with overwhelming love and support for our family.
We did a presentation of slides (pictures) of Kevin and Delaney growing up through the years. Delaney’s spirit and smile lit up the lives of all who attended. There were some who came to me after the service and told me even though they had never met Delaney, through the pictures and the comments from the people that spoke, they felt like they knew who Delaney was and appreciated her gift.
Her courage and her love drew many to the memorial service. Many people have told me that Delaney’s courage and spirit through her journey have changed their lives. They are living for today. They are taking time to listen to the people in their lives…their spouse, kids, also friends and co-workers.
In the beginning of 2001 (before Delaney’s diagnosis,) my New Year’s resolution was to keep in touch with the people in my life. My belief is that life is not about things, but the connections or relationships of the people in our lives. Well, throughout 2001, I was able to connect to those people. It wasn’t exactly the messages I would have like to send all of you, but life does not always go as planned.
We have come through an unbelievable journey. We have learned an unbelievable amount of information about hospitals, leukemia, the human spirit and courage. One definition for courage is that courage is moving in spite of your fear.
We will do our best to continue to give and love. The amount of hurt we are experiencing today is directly proportionate to the amount of love we have given and received. The love does not end, it continues to carry us through the days ahead. She will be forever with us.
The Delaney Wright Memorial Fund has been set up to make a difference to the lives of the children being treated in the Hematology/Oncology ward of Children's Hospital. A plaque with Delaney's name will also be purchased using the fund. If you would like to donate to the Delaney Wright Memorial Fund, send it to Children’s Hospital Auxiliary, Delaney Wright Memorial Fund, 3020 Children’s Way, MC 5013, San Diego, CA 92123-4282. Please include “Delaney Wright Memorial Fund” on the check.
We invite everyone to create a page for a keepsake book that contains pictures, thoughts, poems or other expressive ways to remember Delaney. The pages can be filled with photos and notes of stories, special times, and memories to represent how Delaney touched your life. If you would like to create a page for Delaney's keepsake book, please email me with your mailing address and I will send you the keepsake book page with instructions.
Amy, Bob, Kevin, and Angel Delaney
Monday, January 07, 2002 at 10:32 AM (CST)
January 7, 2002 – Heaven has a new angel - Delaney is in Heaven. She is now a beautiful angel in heaven instead of on Earth. She is with God and Grandma Betty (Amy’s Mom) now. She is watching over all those people that she loved here on Earth.
We are sad for the loss of our beautiful child, and will forever be filled with the joy, strength and love that she brought to us. We were so blessed that she was part of our family for 5 ½ years.
Her positive spirit and her way of amazing the doctors remained with her until her final moments here. The infections and leukemia in her body created an imbalance in her body that took her early this morning. She went peacefully, without pain, with Bob and I holding her in our arms. She loved her family and friends very much. These were the things most important to her throughout life. She loved and experienced life with her ‘Delaney’ attitude and zest for living. She will be greatly missed.
In lieu of flowers, a fund will be set up in her name that will be used for a memorial in her name at Children’s Hospital in San Diego. A party in celebration of Delaney’s life will be planned in the future. We hope you can attend and celebrate her life with us.
Thank you for all of your continued support and prayers for our family during this journey.
Amy, Bob, Kevin, and Angel Delaney
Delaney Wilson Wright
April 9, 1996 ~ January 7, 2002
Sunday, January 06, 2002 at 10:11 PM (CST)
We have had a rough start for the new year. On Thursday, 1/3, Delaney had surgery for a new catheter in her chest. She came out of surgery and recovered beautifully. However, due to the surgeon's error (very long story,) not only was the incorrect catheter put in, but it is not in her body correctly. The internal catheter tubing should point down toward her heart, but this one points up toward her neck.
Then on Friday, 1/4, her potassium level went very high and her urine output went to zero. Her breathing was also fast and she was working at it. We went to the ICU at MD Anderson and thankfully, they were able to get the potassium down. Her breathing was very labored and her kidneys were not working up as they should be. We don't know if it is from the medications she has been on or if there is an infection in the kidneys. Needless to say, Bob and Kevin flew back to Houston.
Early Saturday morning, 1/5, she was moved to the Pediatric ICU at Hermann Hospital (associated with MD Anderson.) She is on a ventilator to assist her breathing. The ventilator is set to assist her breathing and not to breath for her. They are very pleased with her breathing at this point. There is some pneumonia left in her lungs, but it is not getting worse.
She is on minimal sedation (just enough to keep her drowsy and from pulling tubes) She is responding to questions and commands and is not fighting the ventilator. The major concern at this time is her kidneys. They are not working up to par. They did an ultrasound on Friday at MD Anderson and saw that the kidneys are enlarged and have some infection in them. The doctors are trying to coax her kidneys into working better slowly (slow, small steps rather than large, drastic measures.) The real question for the doctors is whether the kidneys are infected with a bacteria or fungus. They don't want to start too many new drugs as these drugs may make the kidneys more sick.
The doctors have decided to give Delaney donor white blood cells to help her body fight the infections. These white blood cells need to be collected daily here in Houston from 2-3 specifically screened people. Amy is not able to donate as her iron count is too low (could stress have anything to do with this???) Roy (Amy's brother) and Bob are the white blood cell donors. They will need to donate every other day. Both are glad to be able to help.
The good news is that the Clofarabine worked great (almost too fast...also difficult on the kidneys to sift out all the broken up leukemic cells.) Her vital signs are very stable and all other organs are working great! Since she is on minimal sedation, she can move around, watch TV, and show her spirit and spunk!
We have had great care from all the doctors and nurses (except the one surgeon) and continue to have confidence in the team that is treating her. We would appreciate your prayers for Delaney and her quick recovery.
Amy, Bob, Kevin, Delaney and Uncle Roy
In Houston
Friday, December 28, 2001 at 07:35 PM (CST)
Good news from Houston! Delaney came through the bronchoscopy with no problems yesterday. Her pneumonia is stable (meaning the antibiotics are working and she is not having any fevers.)
She started the new chemo drug, Clofarabine, today. She received it without any complications. She will receive it for a total of 5 days. Her blood counts will be watched closely for the next few weeks. We are hoping and praying that the drug knocks down her leukemia.
We are very excited to start this treatment and happy that she if feeling better. She went to the playroom for two hours this morning. Her personality is back, she is talkative, smiling and telling the nurses what to do when (which is always a sign to us that she is feeling better.)
Keep those prayers coming our way...they are working!
Amy, Bob, Kevin, Delaney and Uncle Roy
Wednesday, December 26, 2001 at 06:23 PM (CST)
We had a nice quiet Christmas Day here at the hospital. In addition to the presents that Santa brought to the R.McDonald house, the volunteers at the hospital brought a huge bag for Kevin and Delaney. The hospital room here is bigger than those in San Diego and can accommodate us all for an evening meal. (Two of us eat using Delaney's tray, and two use a guest table with two chairs.)
The real Christmas present for us was that Delaney did not have any fevers on Christmas Day (and none since.) The good news is that Delaney's pneumonia is not getting worse, and may be getting better. Her breather is easier and the breathing treatments have stopped. The last step before receiving the new leukemia drug is for Delaney to have a bronchoscopy (sp?) tomorrow. This is where they 'wash' her lungs with saline and take a sample of the gunk in her lungs for the lab to take a look at. This way the Infectious Disease doctors will have confidence with the medicines they are using. (Basically, they need proof from the lab that she is really getting the stuff that is making her better.
The other good news for today is that Delaney is able to eat and keep it down. For the past 5-6 days, everything that she has consumed, has come back up (northbound). She ate some cereal last night and again this afternoon and so far, so good. (If she cannot keep it down, she has to have a tube into her stomach, which we don't want to do.)
If all goes well, we may be able to start the new leukemia medicine in the next day or two!! The caveat here is that Bob and I will be donating white blood cells to her so she will be able to continue to fight the lung infection. The day before we donate, we will have to get an injection of GCSF (yes, the same stuff we gave to Delaney) to increase our level of white blood cells. The next day we will donate white blood cells, which is a little more complicated than giving red blood cells (more on this later.)
Bob and Kevin were scheduled to leave tonight, but have re-scheduled for the 30th. Amy's brother Roy is currently on his way to Houston to help with care for Delaney and give Amy a break. Now he can help with that and entertain Kevin.
Speaking of Kevin, he has had a great time. In the Ronald McDonald House they have Super Nintendo, Nintendo64, Playstation, a pool table, and several other video games. He has made a couple of friends and is having a good time.
We feel we are getting back on track. We are very thankful for all the great people here in Houston who have made our stay as comfortable as possible. The hospital (MD Anderson Cancer Center) is wonderful! But, we do miss San Diego.
Praying for a smooth road ahead,
Amy, Bob, Kevin and Delaney
Friday, December 21, 2001 at 05:15 PM (CST)
Well, we arrived in Houston, and are staying at the Ronald McDonald House in Houston. No problems with the travel portion of the trip.
Delaney has not received the leukemia drug at this point. Instead, her body decided to grow pneumonia in her lungs. This is resistant pneumonia due to the fact that she was on some antibiotics to begin with.
The facilities and people at MD Anderson Cancer Center are wonderful! They changed some of the antibiotics and she is doing better today. They need to keep a close watch because of her counts. She doesn't have many white blood cells (infection fighting cells), and most of those have leukemia (which means they are not developing properly and are not able to help fight the infection.)
In addition to the antibiotics, she is also receiving breathing treatments 3 times a day. True to her way of doing things, she looks good and her lungs sound good. The doctor's believe we caught this in the very early stages.
Her leukemia is not rapidly increasing, but just hanging out, which is great and will give us time for the antibiotics to help get rid of the infection. She is a trooper!
MD Anderson is an adult and pediatric hospital, so Kevin and I are going to walk across the street to Texas Children's for a couple of Beanie's for her.
Her spirit is good. What she really wants to do is get better and see the Ronald McDonald house. Bob took pictures with the digital camera and it looks like fun!
Keep those prayers coming our way!
love to all,
Amy, Bob, Kevin and Delaney
Tuesday, December 18, 2001 at 02:16 AM (CST)
We are off to Houston to participate in the trial at MD Anderson Cancer Center. I will be sending you where we will be staying with the address and contact info in a separate email.
I will continue to check email as often as possible (my goal is once a day, but we will see.) Thank you to all who offered their frequent flyer miles for our trip. Thank you for all of your support and assistance for our family.
We are all (Bob, Amy, Kevin, and Delaney) flying out on Tuesday morning. Delaney will see the doctor on Wednesday and could receive the new medicine as early as Thursday.
Today, she saw her doctor here in San Diego, Dr. Allen. Once again, Delaney defies the rules. With her counts, she should be not feeling well. Delaney feels and looks great. She has spent the day receiving blood and platelets (loading her up for the trip!)
By special request, Santa delivered some of our gifts today. Tonight, we will have our San Diego Christmas. Then on the 25th, we will celebrate again in Houston. Santa's a smart one...he knows where you are and if you have been good!
I know some people have asked "what do I pray for?" Pray for the new medicine (clofarabine) to work against Delaney's leukemia. Pray for her quick recovery and for the absence of fever within her body. Pray for the entire family to keep strong and positive.
Amy, Bob, Kevin and Delaney
P.S. Here is a quote a very good friend of mine sent to me. This pretty much describes how I am feeling these days.
"I know God won't give me anything I can't handle. I just wish he didn't trust me so much." Mother Teresa
Saturday, December 15, 2001 at 02:15 AM (CST)
Delaney's leukemia journey may earn some frequent flyer miles!
Our 'standard' chemo options have been exhausted, and the leukemia continues to come back. With the help of the wonderful doctors at San Diego Children's (and some internet investigating from Amy,) we have found two new drug trials that Delaney is eligible for. This is a great accomplishment...first, to find more than one trial for her relapsed AML Leukemia and second, that she meets the eligibility requirements for them.
One of the trials is at the National Institute of Health (NIH) in Bethesda, Maryland, and the other is at the MD Anderson Cancer Center (known world wide in the oncology world) in Houston, Texas. Although we are still investigating, it looks like the trial in Houston is a great match for Delaney. Bob and I are encouraged by the people we talked to at MD Anderson.
We will have to leave as soon as possible (early next week) as Delaney's disease continues to progress. Fortunately, Delaney feels and looks great (which is a great way to enter a trial in a new environment.)
We have not nailed down all the arrangements, but I am busy contacting organizations that volunteer to fly cancer patients to their treatment hospitals, etc.
Keep those prayers coming!
Amy, Bob, Kevin and Delaney
Wednesday, December 12, 2001 at 09:09 PM (CST)
Delaney's latest blood test showed blasts (leukemia cells.) This is devastating news for us. Delaney's leukemia is very resilient. We are running out of options to get her into remission. And we need to be in remission before the cord blood transplant. We spoke with the doctor today. She will be researching alternatives with her colleagues.
We go back to the hospital tomorrow to check her counts. The doctor wants to start chemo as early as possible to get Delaney home to enjoy the holiday. As usual, Delaney does not act or feel sick.
We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
Tuesday, December 11, 2001 at 09:34 AM (CST)
Yes, it's true...no news is good news (many have asked, so here is the update.) Delaney remains at home while her bone marrow is recovering from the last round of chemo. She continues to be fever free (which is why she is able to be home!)
Delaney spends much of her time at home (isolation to keep the germs away.) She is able to play, eat and be a 5 1/2 year old girl as much as her body will let her. She does get tired and takes daily rests. But she is also 'bored' by watching TV...meaning she wants to play a game or play with her Lego's. It is great to see her personality back.
We go to the hospital twice a week for blood counts. We are in a wait and see mode..waiting for her white blood cells to recover and then in to transplant. No dates for the transplant at this point. Much depends on her counts. We will keep you informed of information and progress as we know the info.
Kevin's tennis league is done for the year. His team took second place and he received a trophy. He had a great time and will play again when the league starts up in the spring. He will continue to play weekly at the tennis clinics (group lessons/practice.)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Amy, Bob, Kevin and Delaney
Monday, December 03, 2001 at 02:58 AM (CST)
Delaney was able to come home on Friday 11/30. We have had a great weekend at home enjoying some family time. We decorated the Christmas tree (it is great fun for the kids to unpack ornaments from previous years and get excited about the holiday. Bob also put lights around Delaney's bedroom window. They look great inside and out! Kevin's window is next.
She is feeling good. Her weekend was filled with playing in her room, helping Dad make pancakes on Sunday morning, and making dessert in her Easy Bake oven. It is great to have all of us home.
We go back to the hospital for a blood count check tomorrow. We are in a wait and see mode..waiting for her white blood cells to recover and then in to transplant. No dates for the transplant at this point. Much depends on her counts.
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Amy, Bob, Kevin and Delaney
Friday, November 30, 2001 at 02:55 AM (CST)
Good News!! Delaney has been fever free the last 3 days! If all goes well, we will go home on Friday (11/30.) Delaney is back to her energetic, wonderful self. She has had three great days---eating, laughing, riding the bicycle all around the hospital. When she says, "I'm bored, can we go to Legoland?", it just warms my heart. It is great that she feels she has the energy to go. In reality, she is tired as her body is working very hard. We have tried to keep her body strong with walks and bike rides, even during the tough days. I think this is paying off...strong body = strong mind...or is it the other way around?!? I think it works both ways in her case.
She is busy with many crafts and games in the playroom. Her smile is infectious. There are some new nurses who have not seen the 'real' Delaney up to this point. They really enjoy seeing the turnaround in her. It is great to have her personality back in full swing.
Her counts are at zero, rock bottom, which is expected (evidence the chemo is working.) This concerns the doctor, but we reassured her that we would be back at the first sign of infection (read fever of over 101.) The plan is to decorate the house and the Christmas Tree. Unfortunately, because her counts are so low, we cannot have visitors. Thanks for your understanding. We will be administering two IV antibiotics round the clock at home. (I am getting my nursing degree by starting with the 'hands-on' portion of the program. *grin* )
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Amy, Bob, Kevin and Delaney
Monday, November 26, 2001 at 03:02 AM (CST)
Delaney has finished her four days of chemo. The particular chemo she was receiving has the common side effect of fevers. Not wanting to be left our, she had fevers throughout the weekend. We are looking forward to no fevers in the days ahead.
She will continue getting GCSF (Growth colony stimulating factor - stimulates her bone marrow.) The doctors will watch her counts over the next 2-4 weeks. We hope and pray the good cells come back without the leukemia cells. She is working towards remission and then into her cord blood transplant(no dates for this at this time.) We will keep you updated.
Kevin saw the Harry Potter movie twice this weekend (once with Mom and once with Dad.) We all loved it! Kevin is reading the book and is enjoying it. Bob and I have read all four books.
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Amy, Bob, Kevin and Delaney
Thursday, November 22, 2001 at 02:02 AM (CST)
Delaney has blasts in her marrow which was checked 11/20. She will be starting 4 days of fludarabine and Ara-C tomorrow (11/22.) She will also be getting GCSF during this chemo treatment. She has done well with Ara-C in the past (in terms of tolerating it and in getting rid of the leukemia cells.)
She is working towards remission and then into her second transplant. A 5/6 cord blood match has been found. We will be able to do the transplant in San Diego (LA was the alternative.) We know that this transplant will be more difficult for Delaney, but remain confident that she will do well (doctor's are confident also.)
Thank you for all your positive thoughts and prayers for our family as we go through this journey. Hope all have a wonderful Thanksgiving day and weekend.
Amy, Bob, Kevin and Delaney
Tuesday, November 20, 2001 at 09:05 PM (CST)
Just a quick update...Delaney remains in the hospital. She has some 'non-typical' cells in her blood and today they checked her bone marrow. Because her counts are low, there is not much in her bone marrow. What this means is that the pathologists need to take a close look at what is there and determine if the cells are just 'atypical' due to all that is going on in her body, or is it the leukemia. They will know sometime tomorrow.
Delaney may or may not be in the hospital for Thanksgiving. Not to worry...we have an offer to bring food in if necessary and we have been invited to some friend's house for Thanksgiving. (Kevin is looking forward to the sleep over that night!) Thank you to the Jorgensens!
Unfortunately, because Delaney's counts are so low, she cannot have visitors as the risk of infection is too great.
Thank you for all your positive thoughts and prayers for our family as we go through this journey. Hope all have a wonderful Thanksgiving day and weekend.
Thank you to all who have sent email messages to me regarding kids and their families who have gone through a cord blood transplant and continue to do well. The success stories are great encouragement.
Amy, Bob, Kevin and Delaney
Sunday, November 18, 2001 at 07:11 PM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney had an additional surgery this morning to remove some infection from her old hickman catheter site. Her surgery was early this morning at 8:00. She was back in her room and watching cartoons well before lunch. After lunch, she was off to the playroom. Why let a little surgery get in the way of your day?!?
The wonderful news is that a 5/6 cord blood match was found for Delaney! They are doing further testing to ensure the match is right for her. This specific cord blood has been 'reserved' for her. All of your prayers for the cord blood match were successful!!!
The next step is to clear the bacteria infection she is currently fighting (since her body does not have many white cells, the surgery was to help this battle along.) The good news is that it has not spread to other areas of her body and is on the right medications.
The goal is to get this treated so she can come home and continue on the path to the transplant.
Amy, Bob, Kevin and Delaney
Saturday, November 17, 2001 at 03:04 PM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Bob and I had our appointment with the transplant team at Children's Hospital in Los Angeles. The doctors, nurses and the team we met with were great! The doctors at LA Children's Hospital and San Diego Children's Hospital will work together to give Delaney the best care. We received a tour of their facility (large hospital with a bright and cheery atmosphere.)
In discussing Delaney's case history, it looks like a cord blood transplant may be best (more details later...it's late and it was a long drive.) Further testing will be done to find the best match for Delaney. If we go with the cord blood transplant, it can be done in San Diego. The benefits are that Delaney is familiar with the hospital and staff (that goes for her support team as well.) Also, the support for our entire family is here and will make this easier for us.
The next step is to clear the bacteria infection she is currently fighting. The good news is that it has not spread to other areas of her body and that she has been fever free for the last two days!
Thank you to 'Uncle Roy' who got to spend some extra time with Delaney in the hospital. And a Big Thank You to the DePinto's for inviting Kevin into their home today:)
The goal is to get this treated so she can come home and continue on the path to the transplant. Please pray that a terrific/best case cord blood match can be found for Delaney.
Amy, Bob, Kevin and Delaney
Tuesday, November 13, 2001 at 07:07 PM (CST)
The computer in the playroom at the hospital is now fixed. Yeah! Delaney continues to have private time in the playroom since her counts are so low. She is feeling good today!
Delaney had her hickman catheter taken out and a PICC line placed in her right arm. Her right arm is tender to the touch, but the PICC line is working great. The Hickman catheter needed to come out due to some specific bacteria that was growing around it. She is on some different antibiotics for this infection.
Her first 100 days from the August 3rd transplant has passed! Now she does not need to be on such a strict diet, etc. We will continue to follow precautions because of her low white cell count.
Thursday, Bob and I will go to LA Children's to meet with the transplant team. Delaney will probably not be able to come. Uncle Roy, Amy's brother, will come and spend the day with her. This is a treat for both of them. We will let you know more information as we have it.
Again, we appreciate all you prayers and positive thoughts.
Amy, Bob, Kevin and Delaney
Saturday, November 10, 2001 at 04:38 PM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney is back at the hospital - had to go back in Friday night. It looks like her catheter site has an infection and may have to come out. Since we went in on Friday night, they are going to start with antibiotics and a few tests to see how things look inside. Then on Monday her favorite surgeon will take a look.
According to the doctors, this is something that can happen to 'cancer kids' because of their low white blood counts (no infection fighting cells.) Bob and I were happy that the doctors indicated that our home care of the catheter site did not cause the problem.
The good news is that this bacteria infection is treatable and has not spread to other areas of her body. She feels and looks great, but wants to be home. The goal is to get this treated so she can come home and continue on the path to the transplant.
We have an appointment with the transplant team at Children's Hospital in Los Angeles on November 15th. As always, we will keep you updated.
Keep those prayers coming!!!
Amy, Bob, Kevin and Delaney
Thursday, November 08, 2001 at 04:24 PM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney is at home today and looks adorable in her black kitty sweater with the faux-fur collar. I will try to get a picture of her.
She is done with her chemo and feels great. (Once again, defying the 'normal' expectations.) She has been fever free the entire week and is feeling like her cheerful, smiling self! She continues to get antibiotics to ward off any infections. We will go to the hospital for clinic (outpatient) to have her blood levels checked. Then we come home to enjoy a weekend together.
We have an appointment with Children's Hospital in Los Angeles to discuss options for her bone marrow transplant on November 15th. While we are at home, we are hoping for no fevers or infections. Keep those prayers coming!
Amy, Bob, Kevin and Delaney
Sunday, November 04, 2001 at 03:35 AM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney is back in the hospital, at least we have a room on the garden. :) She was home for Halloween, and had a great time Trick-or-Treating with her friends, and then back in. Her catheter site needs watching as it is not looking great and she has very few white blood (infection fighting) cells.
They also saw some leukemia cells in her bone marrow biopsy from Thursday 11/01. They are going to begin the chemo to keep the leukemia at bay while we wait for a match for the bone marrow transplant. The chemo drugs are mitoxantrone and etoposide (VP-16). The good news is that she has been fever free the entire week and is feeling like her cheerful, smiling self!
If she has a cord blood transplant, it will be done at Children's San Diego (local.) If she has a matched unrelated bone marrow transplant, it will be done at Children's LA. We have an appointment with Children's Hospital in Los Angeles on November 15th.
Keep those prayers coming!!!
Amy, Bob, Kevin and Delaney
Monday, October 29, 2001 at 06:49 PM (CST)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney is home and feeling great! On the way home from the hospital, Delaney explained that when she is in the hospital for a while she gets 'homesick.' Then she explained that she was not really sick, but just wanted to see her home, room and Kevin. What a sweetie!
We have to administer two different IV antibiotics around the clock. Mom and Dad have been getting quite the 'hands-on' education these past few months. Her white blood count (and infection fighting cells) are very low, so we cannot have visitors.
We go back on Thursday for another Bone Marrow Biopsy. They want to keep a close watch on her bone marrow. We will get the results on Friday. Keep those prayers coming!!!
Amy, Bob, Kevin and Delaney
'Each of us has a unique potential waiting to be revealed.'
Friday, October 26, 2001 at 09:51 PM (CDT)
Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Delaney is still in the hospital, but feeling great! She has been fever free the entire week. She is back to her cheerful, smiling self! She will finish her anti-fungal medicine on Monday late afternoon and will be able to come home!
This last week, she was able to go to the Halloween Carnival that the Hem/Onc Family Support Group put together. Kevin and Bob came too. Kevin's costume this year is a doctor (complete with crazy surgeon's cap, real stethoscope and surgery footwear.) Delaney's costume is a Diva (complete with long pink hair, white/silver boa, purple leopard pants and silver shoes.) They had a great time. Sorry, the pictures from the camera are not downloaded yet.
The best news...Delaney had a Bone Marrow Biopsy on Thursday, 10/25, and her bone marrow contains no leukemia cells!!! They will continue to test her blood and bone marrow on a regular basis. Keep those prayers coming!!!
Amy, Bob, Kevin and Delaney
'Each of us has a unique potential waiting to be revealed.'
Sunday, October 21, 2001 at 05:04 PM (CDT)
10:30 am Pacific Time
Delaney continues to be in the hospital receiving antibiotics. This pesky fever (101 ) comes back every afternoon. We do not know the cause of the fever at this time. It does not go higher than 101.? but it has the doctors and us frustrated. When the fever is gone, she feels great! However, when the fever is there, she is not as bright and cheery (expected.) There is a Halloween carnival this week at the hospital and we hope she will feel like attending (yes, the doctor gave her approval.)
She has had a chest x-ray and a CT scan, which were both clear (thankfully.) This weekend, the doctor's started her on some anti-fungal medicine. On Friday, Delaney had a bone marrow biopsy (she was out for it) and we will find out the results Monday or Tuesday.
The leukemia cells are back in her blood tests, not in big numbers, but they are there...so, the oncologists will be starting a different regiment of chemo this week. The goal is to get rid of the leukemia so she can go into transplant.
Speaking of transplant...the search continues for the best match possible of donor bone marrow or cord blood. At this time, we do not know which it will be. If it is cord blood, the procedure will be done in San Diego. If it is donor bone marrow, the procedure will be done at Children's in LA (very good facility for BMT procedures.) The good news is that the insurance will cover the BMT.
Delaney continues to be strong in spirit and positive in attitude. Her body tolerates the medicines better than expected. We are truly blessed for this. We continue the journey and respectfully request prayers and good thoughts at this time.
A note regarding Kevin...He loves tennis (started lessons at the beginning of October.) Today he plays in a San Diego league/tournament for kids tennis. He is very excited. Mom and Kevin practiced for 2 hours on the courts yesterday. He could have gone on for two more hours, but Mom didn't want him to be too tired for the league play today (and she was tired!)
2:45 Pacific Time
Kevin and I are back from his tennis league play...he did great! Tennis is definitely one of his favorite sports!
I just talked with Bob and Delaney is feeling great today, a real turnaround from yesterday and Friday (I guess the anti-fungal medicine is working!) She is her cheerful, smiling self!
Also, there are no blasts (leukemia cells) in her blood today!!! The doctor things that the cells that were reported as blasts yesterday may have been 'atypical' and were reported as blasts. Keep those prayers coming!!!
Once again...she is amazing! Thought you would like to hear a bit of good 'Delaney' news. Thank you for all your positive thoughts and prayers for our family as we go through this journey.
Amy, Bob, Kevin and Delaney
Friday, October 12, 2001 at 03:32 PM (CDT)
Delaney continues to do well and amaze the doctors. She has very few white blood cells (and no blasts,) but acts as if her blood counts are completely normal. She has energy, a sunny attitude and an infectious smile.
We saw the doctor on Thursday, checkup went great. The doctor said the cord blood information arrived in a envelope, but she did not have time to take a look at it. We should know more next week. (Please add a few prayers for some bone marrow or cord blood for Delaney.)
She will either have a cord blood transplant (done in San Diego,) or a Bone Marrow Transplant, which will be done in LA (Children's LA or City of Hope in Duarte, northeast of LA.)
Our first choice is cord blood transplant in SD. Easier on everyone--Delaney knows the people and facility, friends are near, Bob can see Delaney and I can see Kevin on weekends. Our support for all family members are here, ready to help and much appreciated.
Delaney continues to be in great spirits. We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
'Each of us has a unique potential waiting to be revealed.'
Monday, October 08, 2001 at 06:09 PM (CDT)
Delaney had the second Mylotarg treatment last Friday (10/05.) She did great. In fact, they gave it to her on an out-patient basis (we got to go home that night.)
This morning, Monday-October 8, we went in for a blood count check. The great news here is that there are no (as in zero!!) blasts in her blood. This is the best news we could receive!!!
She continues to be in great spirits. We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
'Each of us has a unique potential waiting to be revealed.'
Friday, October 05, 2001 at 03:08 AM (CDT)
Delaney had a great week. She visited her Kindergarten class and loved every minute. She fit right in and the kids were very happy to meet her. She was able to make it for school pictures. She continues to feel great and is acting like the adorable 5-year-old girl we all know and love. We go back in for the second Mylotarg treatment Friday, October 5.
On the Photo page is a picture of Delaney in her 'Diva' wig. (Guess what she is going to be for Halloween?) She has just won a game of Pretty Pretty Princess and wanted her picture taken with her pink hair and the crown. The Diva Princess...so Delaney!
We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
Sunday, September 23, 2001 at 03:27 AM (CDT)
Delaney's bone marrow has only 20% blasts or leukemia cells. This amount is low which means we caught the relapse early (which is great.) Delaney's leukemia cells are basically the same as they were in February. They do have the marker needed for the antigen therapy. Also, they do not have any chomosomal abnormalities (which is also very good.)
Delaney had the Mylotarg infused on Friday, 9/21. She did great and did not have any side effects other than some stomach pain. She was able to come home Saturday. She is feeling fine and her appetite is normal.
Her blasts in her blood test were 8% before the Mylotarg and down to 4% Saturday morning (going in the right direction!) She continues to feel good and has great energy. She will get her blood checked twice a week to watch her counts. The doctors expect her white blood count to go down and possible fever to occur. The Mylotarg is then given 14 days after the initial infusion. The plan is to get back into remission and then a cord blood transplant.
We are praying for the therapy to work without complications. We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
Wednesday, September 19, 2001 at 11:04 PM (CDT)
This is the email I never wanted to write...they found some blast cells in Delaney's blood test on Wednesday (5% blast cells.) Delaney had a bone marrow test today and is back at home. We are waiting for the results (how many blast cells in the marrow?) The doctors are planning to do a new antigen therapy called Mylotarg. This therapy targets cells with a specific gene marker which is located only on the leukemia cells.
To be able to to this specific therapy, the bone marrow cells need to be specially tested and categorized in the lab which takes a few days. We will get the results on Friday. For this new therapy to work, her leukemia cells need to have a specific gene marker on them. Delaney's leukemia cells in February did have this marker, so the doctor is anticipating that the marker is still there. Another issue is that this new drug comes from Seattle and with the flights not running as often, we may need to wait until Monday to begin. Ideally, we would begin the therapy on Friday.
This therapy is easier on the patient. The drug works on the white blood cells, particularly those with the marker, and does not effect the red cells or platelets. The name of the drug is Mylotarg. Here is a link that explains the therapy: http://www.fhcrc.org/news/science/2000/05/21/mylotarg.htm
Needless to say, we are very sad that she has relapsed. The good news is that she is feeling great! Her chemistry panel is completely normal. She is full of energy and smiles. She is disappointed that she has to have more treatment, but knows she has to go through it.
We are praying for her cells to have the marker and for the therapy to work without complications. We continue the journey and respectfully request prayers and good thoughts at this time.
Amy, Bob, Kevin and Delaney
Monday, September 17, 2001 at 12:15 PM (CDT)
Thank you you for all the prayers and good wishes for all of us. Our hearts go out to everyone who has been touched by the events of last week. It quickly puts many things in perspective for all of us. We are truly thankful for all of our friends and the support you have given us through this time.
Delaney is continuing her great progress after her autologous stem cell transplant. Today, Monday, Sept 17, is day 45 of her transplant. She continues to amaze all of us.
She continues the isolation and the work on her Kindergarten assignments. Yesterday, Delaney had a play date with her friend Layla. Layla was in her preschool with her and is in her new Kindergarten class. Layla came over and the minute they saw each other, it was like no time has passed for them. They ran upstairs and played, giggled, laughed, and had a great time.
A quick update on Kevin...He is in 3rd grade and thrilled with his class and teacher! He is talking about it (not usual for him) and very excited to be learning cursive writing. Another great thing is that he knows 2/3 of the class from his last two classes. He is doing great! We did something a little different this summer with him. We had him do 3-4 pages of workbook work 5-6 nights a week. His skills are sharp and the fact that he needs to sit down to do homework (to earn the computer or video games) is now routine. He is really growing socially and emotionally. His new sport is tennis. We watched the tennis matches on TV and he has a Nintendo Mario Tennis game. Kevin, as many of you know, is a very visual learner. From watching tennis on TV and playing the Nintendo tennis, he learned how to serve. He has had no lessons, Bob and I have not taught him. One day during our 'tennis practices' he just did it...served the ball. We are so proud of how he has done this past 9 months.
Thank you to everyone for the good wishes and prayers for Delaney. If you are receiving the email updates and wish to be removed from or added to the list, please let me know at Wright_Amy@hotmail.com. Love to all,
Amy, Bob, Kevin and Delaney
Monday, September 10, 2001 at 02:30 PM (CDT)
Thank you you for all the prayers and good wishes for all of us. Delaney is continuing her great progress after her autologous stem cell transplant. Today, Monday, Sept 10, is day 38 of her transplant. She continues to amaze all of us.
She is signed up for Kindergarten but unable to attend regular classes until the first 100 days are behind her. Day number 100 is in early November. Until that time, she will continue the isolation and together we will be working on her Kindergarten work. We get the work from the teacher once a week and she is excited to do it! Oh to be 5 and excited about homework.
Everyone is doing so well, I hope and pray the update emails will continue to be this non-eventful. Here is a prayer that I wrote and sent it to a friend of mine who is also going through some challenges in her life. I think it sums up how I feel at this point in my life.
God,
I just wanted you to know that my friends and I have lives that are as
'interesting' as we want them to get. We thank you for all of the
non-interesting days and times of our lives and would like you to know that
we prefer the simple, dull, loving days and times we spend with our families
and friends.
Please give us the opportunity to explore our talents to help others with
their 'interesting' lives and challenges.
Respectfully submitted,
Amy, Delaney and Kevin's Mom
Thank you to everyone for the good wishes and prayers for Delaney. Love to all,
Amy, Bob, Kevin and Delaney
Tuesday, September 04, 2001 at 02:52 AM (CDT)
Thank you you for all the prayers and good wishes for all of us. Delaney is doing great after her autologous stem cell transplant. Tuesday, will be day 32 of her stem cell transplant. She has done extremely well her first 30 days. According to the doctors, the first 30 days are the most critical. Well, we made it with flying colors! She continues to amaze all of us. The isolation and precautions are very important for the first 100 days. We go to the hospital twice a week for blood tests and doctor checks.
She is signed up for Kindergarten and went to meet her teacher one-on-one. She will have to wait to attend regular class until the first 100 days after transplant. However, the teacher will be sending the school work home during this time. Kevin starts 3rd grade this year. And he already knows about 2/3 of his classmates from previous classes.
As many of you know, Delaney is a very social child and wants to see her friends. This weekend, we had a couple of play dates in the park. She had a great time. She and Kevin got new bikes last weekend (end of treatment gifts.) This is Delaney's first new bike ever and Kevin's since he was two. Delaney's is pink and adorable. Kevin's has gears and hand brakes. They both got new helmets to match. Sorry, but no picture this week as the batteries ran low on the camera.
Thank you to everyone for the good wishes and prayers for Delaney. Love to all,
Amy, Bob, Kevin and Delaney
Monday, August 27, 2001 at 05:29 PM (CDT)
Thank you you for all the prayers and good wishes for all of us.
Delaney came home last Monday and is doing great! She continues to amaze us all with her energy level and 'typical' 5-year-old behavior. The entire team of doctors and nurses are thrilled with her progress and are caught smiling from ear to ear when talking about her.
We will continue have twice a week visits to the hospital to ensure all is progressing as planned.
It is great to have the entire family at home again. Simple things such as having a meal together, washing the car, reading bedtime stories together are happening again in the Wright household.
I know Delaney's friends want to see her and schedule a play date with her as soon as possible. She would love it! However, there are bone marrow transplant or BMT precautions that we need to follow (her stem cell transplant, is a self-donating bone marrow transplant.) All BMT patients are to follow these precautions for the first 100 days after transplant (or until feeling better.)
Delaney's transplant was done on August 3rd, which is Day zero. Today is Day 24. She came out of the hospital on Day 17 (a Children's Hospital record.) To give you a sense how well she is doing, the typical transplant patients stay in the hospital is 3-6 weeks post transplant.
To help all understand the precautions, here is a summarized list for your reading pleasure.
- Most important is cleanliness. Hand washing before and after just about everything.
- Crowds and people - Avoid crowded areas, especially air conditioned buildings such as stores, movie theatres, school (more about this later), etc. Stay away from anyone who is sick or has been around someone who is sick. Delaney's immune system is compromised (young and growing) but will take a while to mature. Delaney can be outside and see friends, but no hugs. So we will be able to have park play dates.
- Animals - do not come in contact with any animals and/or animal products. Hand washing is a must for friends who have animals.
- Physical activity - is a good thing and necessary to keep her lungs and body strong. However, she may tire easier than before. We need to schedule rest times to give her body a chance to gain its strength and stamina back. Outdoor activities are good, the outside air typically does not carry disease with it. However, we need to be very careful with sun exposure and use spf clothing and/or sunscreen.
Delaney still has a catheter in her chest. This needs special care and cleaning daily (a potential area of infection.) We also need to limit her physical activity to protect the catheter.
- Swimming - no swimming in public pools (which is a big disappointment.) No swimming in the ocean for quite some time.
- Immunizations - since the immune system is intensely affected by the transplant, she will have to go through some re-immunizations. Since her transplant was self-donated, some of the immunizations may still be in effect.
- School - Delaney will be starting Kindergarten this year! She will be meeting her teacher this week. She will not be attending regular class until later this year. In the interim, we will be using the school curriculum and maybe even a teacher to keep her up-to-date with the class. We are planning to have one of the child life specialists from the hospital come into the classroom to explain leukemia to the students. Delaney will be 'visiting' the class in 1-2 hour slots a couple of times a week. It is important for her to be identified with a classroom and for her to feel included. When and how much she will attend will depend upon how she is doing. One of our goals is to make picture day so she will be able to take the class picture. We are more concerned with social development and feeling part of the class and regular everyday life than with academics. If you have any great ideas or feedback on our school strategy, please email me.
Love to all,
Amy, Bob, Kevin and Delaney
Monday, August 20, 2001 at 07:40 PM (CDT)
Thank you you for all the prayers and good wishes for all of us.
As many of you know, today is my birthday and I am going to receive the best gift possible...Delaney is coming home this afternoon!!!
Per Bob, she is quite the celebrity around the hospital for doing so well so soon after her stem cell transplant. And she is enjoying every minute of it! We will continue to keep her isolated here at home and will have frequent visits to the hospital to ensure all is progressing as planned.
Love to all,
Amy, Bob, Kevin and Delaney
Monday, August 20, 2001 at 04:23 AM (CDT)
Thank you, Thank you for all the prayers and good wishes for her.
The stem cells continue to work and the big news is that Delaney is eating. This may seem like a small thing to most of us, but for a stem cell or bone marrow transplant patient this is a big step in the right direction!
Since her white blood count (WBC) was very high on the 16th of August, the GCSF injections were stopped (much to Delaney's delight.) GCSF stimulates the production of white blood cells. The WBC numbers have dropped a little (which is expected), but overall, her blood work is looking great!
The doctor says she looks and feels so good that we may be able to come home the beginning of this week!
Sorry this note is getting out late...Amy's replacements (Bob and Uncle Roy (Amy's brother)) both came down with colds this weekend. Since we need to keep Delaney away from any type of cold or infection, Mom stayed through the weekend. Dad came in to spend some time with Delaney Sunday/Monday.
Delaney's spunk and personality are in full swing. She is once again our princess. She is feeling much better and tired of being in one room for 23 hours a day (Mom too.) We look forward to having all of us home soon.
What's next? She will be closely followed for the first 100 days after transplant. Transplant Day, August 3, is day zero. Today, Sunday, August 19, is day 16. During these 100 days we will all have to be careful regarding exposure to any type of bacteria or infections. More on that in a future email.
Love to all,
Amy, Bob, Kevin and Delaney
Saturday, August 18, 2001 at 07:14 PM (CDT)
Delaney's counts are still great, and she is eating again. This is a good step to be able to come home. Her 'spunk' is definitely healthy and so is her sense of humor.
August 15, 2001
Thank you, Thank you for all the prayers and good wishes for her. The stem cells are working! I am a firm believer in prayer therapy.
Her white blood count (WBC) is rapidly increasing, which is what the doctors are watching. Monday her WBC count was 1.3, Tuesday it was 3.5, and today it is 6.6! (6.6 translates to 6600, normal range is 4000 - 10000) Everyone here is smiling when you talk about Delaney!
She looks and feels great! She is currently receiving IV nutrition. They began to taper the nutrition tonight. We are starting to get her to eat, but have not had much luck due to the IV nutrition filling her up.
The doctor says she looks and feels so good that we may be able to come home next week!!!
She is enjoying all the cards and pictures you have been sending. (Frances, she LOVES the cat poster!)
Love to all,
Amy, Bob, Kevin and Delaney
Sunday, August 12, 2001 at 05:08 PM (CDT)
Thank you to everyone for the good wishes and prayers for Delaney.
We are on day 9 (day of transplant = Day 0.) She continues to do well (better than expected.) The chemo used for the transplant is very strong and the doctors and nurses expect a stem cell transplant patient to not eat, be in pain, and spike a fever. She is complying on all accounts. She is no longer eating, but she is on IV nutrition. Wednesday she began feeling quite a bit of pain in her stomach, and was put on a morphine drip. Not to worry, this is standard practice. The morphine drip machine also lets her control a boost of medicine if she needs it. This has really helped in making these tough days go by. On Thursday, she spiked a fever (103.5 - my little overachiever!) and is now receiving IV antibiotics to ward off any infection.
Through all this, she continues to look good and she can't wait to get out of the hospital and back home. Bob spends the weekends with her and he said she has started to perk up.
The doctors and nurses continue to comment on how well she is doing. Delaney is enjoying the cards and pictures she is receiving-we decorate the room with them. Her white blood count is at zero (where it should be) and will begin to come up this week (we hope.)
We are praying for these stem cells to engraft in her bone marrow quickly and begin producing new blood cells. Thank you for your prayers, positive thoughts and good wishes every day (wee do feel them.)
Bob, Amy, Kevin and Delaney
Tuesday, August 07, 2001 at 06:22 PM (CDT)
Thank you to everyone for the good wishes and prayers for Delaney.
She continues to do well (even better than expected.) She looks great and has the attitude to match. She is eating (although small amounts) and is also getting IV nutrition at this time. We all want to keep her strength up for building new cells and fighting infection.
It is great to see the oncologist doctor smiling from ear to ear after her daily visit/check in with Delaney. Delaney is enjoying the cards and pictures she is receiving. Her counts are down and will stay down for a few days. The counts should then begin to come back up.
We are praying for these stem cells to engraft in her bone marrow quickly and begin producing new blood cells. Thank you for your prayers, positive thoughts and good wishes every day.
Bob, Amy, Kevin and Delaney
Photos of Delaney on the web:
- http://www.hip-hat.com/customerphoto.html
This is the hat with hair company that we received Delaney's hat from.
- http://www.rosiescalicocupboard.com/CampJuly.html
Rosie's Calico Cupbord has an army of volunteers who make a quilt for every child that goes to Reach for the Sky Day Camp (camp for cancer kids and their siblings.)
Photos of Delaney in Reach for the Sky Day Camp: In the large picture of all the campers, Delaney is on the right side wearing the pink hat. Scroll down and see more pictures of her again with the pink hat.
- http://www.rosiescalicocupboard.com/CR4TScomments.html
Camp reach for the sky comments regarding the quilts: email and picture we sent in to Rosie's site as a thank you for the beautiful quilt.
Saturday, August 04, 2001 at 01:47 PM (CDT)
August 3, 2001
Thank you to everyone for the good wishes and prayers for Delaney. We have had four good days at the hospital. Sorry about not getting email to everyone more quickly, the playroom computer connected to the Internet is broken.
The surgery on Tuesday went great. She came out of surgery, woke up in the recovery room and went into her room all in great spirits. She then ate a late lunch and even went to the playroom that evening. Once again, she shows great strength and that she is going to live her life as she wants to.
On Wednesday, she received the very intense chemo treatment. She did great - no side effects seen yet. She is receiving an anti-nausea medication and a couple of 'therapies' to keep up a resistance to mouth sores.
On Thursday, she received a product to help her immune system from attacking itself. This is given to stem cell and bone marrow transplant patients. She will receive this every Thursday for some time. Again, no side effects seen (or expected in this case.)
Today, Delaney received the stem cells, which were 'defrosted' and prepared for her this morning. These are her cells that were collected from her in June of this year. Although there was much activity outside the room this morning, to Delaney, it was another blood transfusion. She knew they were her stem cells, but she was more interested in her Wizard of Oz stage play set (This is a set where you cut out and put together a replica of a stage to put on the Wizard of Oz play -- complete with multiple backdrops and characters.)
Bob came today to spend some time with Delaney. After she received the cells, she ate lunch and was napping when I left the hospital. She is doing great!!! And we are hoping it continues in this direction. This afternoon, the doctors and nurses were commenting on how great she has done the last four days.
We are praying for these stem cells to engraft in her bone marrow quickly and begin producing new blood cells.
Thank you all, for being supportive of us during this critical time. We can feel your prayers, positive thoughts and good wishes every day.
Bob, Amy, Kevin and Delaney
Sunday, July 31, 2001 at 02:01 AM (CDT)
July 31, 2001
Delaney is going in this morning for catheter surgery and then begins the stem cell transplant.
The chemo she will be receiving on Wednesday and Thursday is very strong. We are praying for her to tolerate this as well as possible.
The stem cells will be infused on Friday. This is a very big day for all of us. We are praying for these stem cells to engraft in her bone marrow quickly and begin producing new blood cells.
Saturday, July 23, 2001 at 02:01 AM (CDT)
Delaney is feeling great and her counts are up! We are headed to Children's for surgery this morning. The surgery is to take out her port-a-cath and pheresis catheter and to put in a Hickman catheter. Well, at least we thought her counts were up...she has a little sinus infection and while her body fights it, the counts are not stable.
We agree with the doctor that the best thing to do is re-schedule for next week. This will give Delaney's system another week to fight the sinus infection and bring her counts up. Medically, the waiting is no problem (actually preferred.) Emotionally, it is a little crazy, but we are learning to be flexible.
Ready for some good news...Last Thursday, Delaney had a bone marrow biopsy. This is where they take a small amount of bone marrow from her hip, this procedure is done with anesthesia. The results are clear!!!! Meaning that there are no leukemia cells in her bone marrow and none in her blood stream. We are very, very happy with the clear result!
Tuesday, July 19, 2001 at 02:01 AM (CDT)
Delaney went in for her bone marrow biopsy this morning and all went well. She is home now and feels great. We will find out the results Friday or Monday.
The plan is to go in on Monday for the catheter surgery and start the stem cell transplant. We will be checking her 'counts' on Sunday afternoon and will know more about our upcoming week at that time
Wednesday, July 13, 2001 at 02:01 AM (CDT)
I am sending this from the hospital. Delaney did not have surgery today as her platelets were not high enough and the surgeon had a busy schedule and then an emergency 2-hour surgery.
We are scheduled for surgery on Monday July 23 (when the preferred surgeon returns from vacation. The stem cell transplant will take place right after the surgery.
Delaney had a great week at camp and we will have next week 'off' to give her body time to increaser her platelet counts.
Tuesday, July 12, 2001 at 02:01 AM (CDT)
Monday through Thursday of this week, Delaney was at a special camp for kids who have had or going through cancer treatment. She is excited about going to camp (and that her friend Coral will be going also.) She had a wonderful time (pictures coming soon.)
After camp, we move on to the catheter surgery, which is planned for Friday of this week. (Yes, this is the 13th; but the way my life goes, 13 is my lucky number.) During the surgery, they will also do a bone marrow aspiration. We are hoping for a 'clear' bone marrow test result. Please send some special prayers and good wishes for this. We will most likely get the results of the bone marrow test next week. We have decided not to stress or worry about it--it won't change the results of the test!
Upon recovery from this surgery, which should be quick, we then advance to the stem cell transplant. This will begin sometime next week (depending upon her counts.) I will let you know more as I do.
Friday, July 8, 2001 at 02:01 AM (CDT)
Delaney was at the hospital this last week. We were able to come home on Friday afternoon and will continue the antibiotics at home. Delaney's counts started coming up at the end of last week. Through the entire week, she looked and acted as if her counts were already up. The doctor and nurses are amazed that she acts and feels like she does while her blood tests show no or very low counts.
Kevin turned 9 on the 3rd of July. He and Dad came down to celebrate it with Delaney and Mom. He was wished a Happy Birthday by many at the hospital. He also took a cake into camp and they all sang Happy Birthday to him. (I can't believe he is already 9!)
For the 4th of July, the kids decorated their IV poles and had a parade through the halls of the hospital. They each won a certificate for their great decorations.
This week Delaney will be going to a special camp for kids who have had or going through cancer treatment. She is excited about going to camp (and that her friend Coral will be going also.)
After camp, we move on to the stem cell transplant. I do not have the exact dates for this yet. I will keep you informed.
Friday, July 1, 2001 at 02:01 AM (CDT)
Delaney continued to be at home all this week. As expected with her type of leukemia and the treatment, her counts are down. For those not familiar with the term counts...the chemo kills the good white blood cells, and then her body makes more.
More often than not when the counts are so low, she will catch an infection and run a temperature. Then it is off to the hospital for IV medication and monitoring of her counts, which is what happened yesterday morning. Dad and Delaney had some quality time at the hospital. They cultured her blood and found gram-negative bacteria. The good news about that is we know what it is and she is on the right medicine.
Mom will be at the hospital with Delaney beginning this afternoon. She is not having fevers any longer and remains in great spirits. Hopefully, we will be able to come home and continue the antibiotics at home.
After Delaney's counts come back up, we move on to round 5. This is when the stem cells taken at UCSD will be transfused back into her body and in 10-14 days; start producing healthy blood cells of all types. Before this takes place, she needs to go through a few (yeah, right!) tests to make sure all is on track. One of the most important is the bone marrow aspiration, where they take some bone marrow and take a look for leukemia cells. Dates to be determined dependent on her counts.
Saturday, June 25, 2001 at 02:01 AM (CDT)
After three days of chemotherapy this week (second half of round 4,) she also received red blood cells and platelets before she could come home. Do not worry; this is quite typical for the AML patient.
What is not typical is the high energy level and positive attitude she displays both at home and in the hospital. Her white blood count is close to zero, and her body is working hard to bring her counts back up. She is smiling, giggling, playing with her brother, etc. Now we are watching for a fever which means a return hospital trip for IV antibiotics.
On Saturday, Kevin had a bowling party for his birthday! (Yes, you can plan a party, design, print, mail the invitations, gather party items, and follow up on R.S.V.P's in a week from start to finish.) The party was a great success. Much thanks to our wonderful friend Tricia for helping out at the party and running back to the house for the cupcakes (comical and appropriate for our lives right now!)
Because of Delaney's low counts, she stayed home with Sue (our wonderful long time babysitter.) To make it a special day for Delaney, her friend Alanna came over and they played all afternoon!
After Delaney's counts come back up, we move on to round 5. This is when the stem cells taken at UCSD will be transfused back into her body and in 10-14 days, start producing healthy blood cells of all types. Before this takes place, she needs to go through a few (yeah, right!) tests to make sure all is on track. One of the most important is the bone marrow aspiration, where they take some bone marrow and take a look for leukemia cells. Dates to be determined dependent on her counts. More about the stem cell transplant to come...
Friday, June 17, 2001 at 02:01 AM (CDT)
Happy Father's Day to all. After three days of chemotherapy this week, she attended her preschool Pre-K graduation. It was an Hawaiian theme and everyone was thrilled Delaney could be there. She felt like a queen as everyone wanted to sit next to her. (A couple of pictures attached.) This was an important event for her to be able to graduate with her Pre-K class. She can now move on physically and in her mind to Kindergarten.
Today, we all went to Legoland for Father's Day. We rode the new Technic roller coaster -very fast! Both kids loved it! The one benefit of having leukemia is that you can get a pass so you don't have to wait in lines at amusement parks. We were there about 4 hours and it made it possible to go on more rides.
On Monday, we return to the hospital for the second half of round 4 of chemo. She will come home on Wednesday. Since the chemo takes her white blood cell count to zero, we will be hoping for a smooth and non-fever recovery (her pattern is to get a fever 7-10 days later so we kind of plan for a return hospital trip.)
Friday, June 10, 2001 at 02:01 AM (CDT)
Delaney's counts were a little low on Friday, so we have had the weekend at home. We all had a great weekend. Delaney is full of energy and smiles. She knows she is unable to do things because of her leukemia (mostly because of the external catheter.)
But by watching her interact with other kids, ride her bike and play on the playground, you would never know she has this horrible disease. She is getting more comfortable with who she is at this time in her life (a 5-year old with no hair, an external catheter, and regular appointments at the hospital.)
This weekend she went to church for the first time since her diagnosis. She did not wear her 'hair' because it itches and becomes uncomfortable. Since she is just herself (of course her hat matches her outfit), others may notice the lack of hair at first, but it quickly becomes a non-issue. She is much more interested in playing on the swings, having a tea party, etc. than talking about the fact that she doesn't have hair. She will tell you that the hair will grow back when she is done with the chemo.
Her eyes are bright along with her smile and attitude. She is truly an inspiration (Yes, we are very proud of the way she is handling all of this.) It was great to see her play with her friends Alanna and Natalie as if the months of treatment, surgeries, and infections never happened.
On Monday, we return to the hospital for round 4 of chemo (2 days in, 5 days out, then 2-3 days in.) On Thursday, Delaney will be able to participate in her Pre-K graduation ceremony (of course I will have the camera--pictures to be coming your way soon.)
Kevin's last little league game was on Saturday. This has been a tough season for us, but we did our best to make as many games and practices as possible. A special thanks to the coaches and members of our team for their understanding. He enjoys baseball, the team environment and is very fast running around the bases (see attached picture.)
We are very proud of how Kevin is dealing with everything. He is well informed of his sister's disease and can inform you of many details. He has been a great big brother through her treatment.
Tuesday, June 7, 2001 at 02:01 AM (CDT)
Tuesday and Wednesday, Delaney breezed through the stem cell harvesting or pheresis at UCSD Hospital. The process is much like dialysis, but instead of cleaning the blood, stem cells are separated out and collected.
The pheresis and transplant processes are the reasons Delaney had the dual lumen (two tubes) catheter inserted. The actual pheresis was not painful or uncomfortable for Delaney. In fact, when asked how the pheresis went, she commented, "It was boring." For four hours of pheresis, she needed to sit or stay in bed for 5-6 hours (including setup and shutdown of the connections and machine. We watched a few videos, puzzles, sticker books, etc.
The goal for pheresis is to collect a minimum of 2 million stem cells per kilo (the measurement standard used.) In Delaney's case, the first day of pheresis resulted in 7.3 million stem cells per kilo. She is quite the over-achiever! In fact, since they also collected on the second day (don't have those numbers yet,) she may not have to go through the pheresis that is normally scheduled after chemo round 4. Great news!!
Friday, when most of you will be reading this, we go back to Children's to see if she will start Chemo round 4 on Friday, or wait for Monday. Our personal preference is to wait until Monday. The pheresis treatment changes her counts, for example, the platelets need to be at a certain level before the chemo can begin. She is feeling great and has a ton of energy--we would love to have a family weekend before the next round of chemo.
Friday, June 3, 2001 at 02:01 AM (CDT)
Delaney was at home this entire week. Her counts are high along with her energy and spunk. Yes, I know the 'spunk' or strong will is great for fighting the leukemia, but it does tend to wear on Mom and Dad. The 'spunk or attitude' shows up most when she is tired.
The weeks with her at home with her counts high are the best therapy for our family. She acts and feels like a 'regular' kid! She laughs, giggles, is silly, gets on her brother's nerves, etc. She is a delight!
We went to see her very good friend, Alanna, in her school play. The class did Peter and the Wolf. Delaney loved it and joined in with the other kids on stage after the performance. She finds the 'hair' itchy and prefers not to wear it. She wears a hat (coordinating with her outfit, of course) and is quite comfortable. If someone asks and Kevin is nearby, he gives a complete report of leukemia, chemo and warns people to be careful of Delaney's left side where her lung surgery scar is located. He has been a great big brother through this entire ordeal. Delaney is looking forward to Kindergarten this fall. She has decided that she wants to play the cat in the play.
On Monday, Delaney will have her first stem cell collection procedure. This procedure is much like dialysis, connected to a machine, painless, but time consuming. This will take place at UCSD Hospital in Hillcrest. Because of her petite size, we have the 'opportunity' to spend the night so they can monitor Delaney. We are not sure of the duration of the stay.
Shortly after the stem cell collection is finished, we go back to Children's for chemo round 4. Since Delaney is still blast (leukemia) free, the doctor's want to continue on the treatment path. She is doing great!
Saturday, May 28, 2001 at 02:01 AM (CDT)
Delaney and Mom spent most of last week at the hospital. The fever went down after one day, but the doctor's wanted to make sure the correct antibiotics were being used. Delaney was able to come home Friday afternoon.
Mom and Dad are giving her IV antibiotics at home every 8 hours. Yes, Bob and Amy are getting 'hands on' nursing experience. It doesn't cause her any pain and well worth doing to have the family together at home.
What's next you ask??? This week Delaney will have her first stem cell collection procedure done. This procedure is much like dialysis, connected to a machine, painless, but time consuming. This will take place at UCSD Hospital in Hillcrest. Because of her petite size, we have the 'opportunity' to spend the night so they can monitor Delaney. Her counts are very good and her 'spunk' and attitude are also quite evident.
Friday, May 20, 2001 at 02:01 AM (CDT)
Delaney continued to be at home all this week. We had a great week that included a surprise visit to her pre-school. The kids and teachers were so happy to see her. She was a little hesitant at first, but it was evident that it was like old times again for her. She was surrounded by her friends and loved every minute of it.
As expected with her type of leukemia and the treatment, her counts are down. For those not familiar with the term counts...the chemo kills the good white blood cells, and then her body makes more. More often than not when the counts are so low, she will catch an infection and run a temperature. Then it is off to the hospital for IV medication and monitoring of her counts.
That's where we are off to this Sunday night. Delaney and Mom will be at the hospital while Kevin and Dad remain at home. Mom will, as always, keep you updated on her progress.
Friday, May 13, 2001 at 02:01 AM (CDT)
Happy Mother's Day to all. Mine was great! My children were home to hug and kiss. We had a very relaxing day that included a walk on the beach.
Delaney is out of the hospital and glad to be at home. While in the hospital, she had a special catheter put in for the stem cell collection and transplant processes. She also completed round 3 of the chemotherapy. Delaney is still in remission (yeah!!) and is on the road to a stem cell transplant. The first stem cell collection will take place in about two weeks (depends upon her counts.) The doctors are very pleased with her progress and great attitude.
The new catheter is external and therefore, requires additional maintenance at home. Daily, we need to change the dressing and flush the catheter with heparin. (Yes, it seems Amy is beginning her nursing education with the hands on portion of the curriculum.) It will soon become just another daily event in our lives. The process gets easier for Delaney each time it is done (she doesn't like the removal of the old tape.)
Delaney also received her 'Hat with Hair' from a company called Hip Hat. This company makes hats that come with hair. (The Children's Leukemia Society picked up the tab.) The hair is not a full wig, but can be worn under any hat. The 'undercap' the hair is attached to is very soft and loose fitting (not like a standard wig.) Delaney loves the look, but needs to get used to the wearing it and the weight of the hair. See attached pictures.
On Saturday, Delaney participated in the Celebration of Champions. This is for all Children's Hospital Hem/Onc patients (past and present.) All of the children run a 1/8 mile lap with their families and a celebrity. The children carry a torch, receive a medal, and are the champions of the day! Celebrities from the Padres, Chargers and local TV stations were there to run with the children. It is a very uplifting and encouraging day. There is also a time for families who have lost a child to cancer to run (our Angels.) The children currently in treatment run and then the long-term survivors run. It is a day for all who have battled childhood cancer in San Diego to come together and encourage each other. See attached picture. Our celebrity was Alan Trammell (coach for Padres.) It turns out that Alan's mother worked with Bob at SAIC...small world. Kevin had fun getting signatures from the Padres.
Friday, May 6, 2001 at 02:01 AM (CDT)
Her personality shines through as bright as ever. It's great to hear Kevin and Delaney giggle and laugh together. Bob and I heard them 'having a disagreement' in whiny voices and we smiled at each other. One of the difficult things regarding a critically ill child is maintaining the level of expectations and discipline in their lives (and the siblings too.) Bob and I have tried to maintain this by having Delaney do as much as she can for herself such as; go up and down the stairs on her own, help decide where her new shelves were installed, vote for Chinese or Pizza (a night off for the cook), get her shoes on, brush teeth, etc. All small, everyday things, but important to her self-confidence and make her feel as 'normal' as possible.
On Saturday, I took the kids and their bikes to the park for a couple of hours. It was just such a regular thing to do!!! Delaney did great riding her bike and playing on the park equipment (just over 1 week after surgery-she is amazing.) Delaney made a new friend at the park, Zoey. The two of them rode their bikes, played in the sand, had a snack...you get it, normal stuff. Zoey's mom was there also. She was very nice and will be praying for Delaney. (I don't know of a limit on prayers, and if you do know of such a limit, please keep it to yourself.)
On Sunday, we went to the park with Delaney's friend Sierra (from D's school) and her brother Bryce (who is friends with Kevin.) We stayed at the park for a couple of hours and then went to lunch. The kids had a great time.
Delaney goes back into the hospital on Monday to begin round 3 of the chemo and to receive a special catheter for the stem cell harvesting. Stem cell harvesting is the process of collecting your stem cells from the blood stream. The collection of the stem cells is painless, but time consuming (much like dialysis.) The stem cells are those cells that make the different type of blood cells. The stem cells will be 'cleaned up' and frozen for transplant time.
The good think about a stem cell transplant (vs. an unrelated donor transplant) is with a stem cell transplant; there is no Graft Vs. Host Disease (GVHD.) GVHD is when your body rejects the cells of the transplant donor. With the stem cell transplant, the donor and the recipient are the same person. This makes the recovery easier and the long-term prognosis better.
Sunday, May 1, 2001 at 02:01 AM (CDT)
The good news is that the pathology report shows nothing. The tissue is scar tissue. The doctor's will keep an eye on it as Delaney goes through her treatments.
Even better news is that Delaney is at home! She is feeling good, although a little sore on her left side from the surgery. As we came into the house she said, "I love our house."
We will go back into the hospital next Monday to begin round 3 of the chemo and to receive a special catheter for the stem cell harvesting (will explain in a future email.)
Friday, April 29, 2001 at 02:01 AM (CDT)
Delaney's lung surgery on Thursday went well, but we did have to spend one night in the ICU. Because the nodes were not on the perimeter of the lung the surgeon went in to her left lung under her left arm between the ribs. He did the surgery in such a way to maintain the integrity of her back and shoulder muscles. The doctor's quote in explaining it to us was "When she is in the 2xxx Olympic 400m relay swim final, she will be able to go for the gold!"
In recovery, they initially had her connected to the ventilator, but once the great ICU staff was able to suction the 'extra mucous' from her lungs, she was able to breath on her own and was off the ventilator that evening.
Although it was great to see the familiar faces of the ICU staff, next time we will visit for purely social reasons. The ICU doctors, nurses, and respitory therapists recognized Delaney and were first concerned for her, then enjoyed seeing her recover quickly. She even helped them during the extibation (removal of the breathing tube) process. She never ceases to amaze us! She was able to go back to Hem/Onc early the next morning (we love the garden view room.)
The initial report from the surgeon is that the nodes in her lungs are not cancerous (either the leukemia or a new type of cancer.) We are waiting for the pathology report (we will receive it Monday or Tuesday.) We are hoping that the tissue is scar tissue rather than a fungal infection (difficult to get rid of.)
She is still in the hospital recovering from the surgery. Lung surgery is painful and slow to recover partly because you use your lungs all the time to breath. :) Her blood counts are coming up and her spirits are high. Hopefully, she will be able to come home this week.
Friday, April 22, 2001 at 02:01 AM (CDT)
Speaking of which.... Delaney continues to be in the hospital fighting the infections, both gram positive and gram-negative varieties (why limit oneself to only one type!) She continues to receive antibiotics and anti-fungal medications. She still has fevers about twice a day, but they go away with Tylenol. When non-feverish, she feels and acts great! The doctors are amazed at how good she looks and acts. As one of the doctors said, "You would never know she is neutropenic (no white blood cells able to fight infection) and is fighting more than one type of bacteria by seeing her."
All of the Power Puff tattoos on the nurses and patients are Delaney's creative and sharing contribution to the positive attitude in the Hem/Onc unit.
Delaney is in one of the rooms on the beautiful garden. One day we took the bicycle, which carries the IV pump with meds, and went to another garden within the hospital grounds (see picture attached.) Being able to get 'outside in the sunlight and fresh air' really helps both patient and caregiver.
We would appreciate some special prayers and good wishes tomorrow. On Monday, she will have a CT Scan. They are doing a scan to see if there is another cause for the continuous fevers. The CT scan is non-intrusive to her, but as always, we hope nothing is found to complicate her recovery.
Friday, April 15, 2001 at 02:01 AM (CDT)
Happy Easter to all! And thank you to everyone for Delaney's great birthday wishes. She had a wonderful day. In fact, her Aunt Carol and Uncle Mike, from Sacramento, were here to celebrate it with us. Carol and Amy have known each other for 20+ years (yes, we met when we were...young!) She loved the special visit from them. We even gave them a tour of the gardens at Children's Hospital.
Speaking of which.... Delaney went back into the hospital yesterday morning with a fever. When a leukemia patient with basically no white blood cells (the infection fighters,) gets a fever of above 101, they need to go in for IV anti-biotics. For a patient being treated with chemo this is a regular bump in the road.
Her blood was cultured to see if any specific bacteria grew. The good news is it did! Funny we should be happy about this...but now that they know more about what is causing the fever, specific medications can be ordered and fight the bacteria. (It was Gram-negative for those of you that understand. If you don't, no worries...the doctors are prescribing the right medication to take care of it.)
Delaney is in one of the rooms on the beautiful garden. Kevin and I will be going there later today to deliver the packages the Easter Bunny dropped off here. We will also be having an Easter Egg hunt in the garden. Should be fun.
Her fever is being controlled with Tylenol. She is comfortable and her attitude is right where it should be. She likes to help the nurses draw the blood and open/clamp the clamps on the IV lines. She also knows how to 'flush' the IV lines. Being in control of your body and what is going on around it is a great sign of her strength. Other than the fevers, she feels great. She is able to go to the activity rooms and rides the special bikes all around the hospital.
Friday, April 8, 2001 at 02:01 AM (CDT)
On Monday, Delaney turns 5!!!!!! And yes, she will enjoy it at home. Thank you for all your prayers and good thoughts.
Delaney's three days of chemo went great. Her new favorite activity is to ride around the hospital corridors on the 'Hem/Onc' red bike. The red bike is a tricycle type bike with room/pole in the back for the IV pump and bags of medicine. Of course, she has on an adorable outfit, complete with matching hat, matching finger and toenails. She prefers sandals rather than closed shoes (although I think she just likes to show off her painted toe nails.)
She came home Friday afternoon. She is feeling pretty good and her appetite is wonderful. Her personality is back and in full force. She likes to help Dad make waffles or pancakes in the morning.
We go back to the hospital for a clinic appointment on Monday and Thursday mornings. This is just for a blood level check. She gets to play in the playroom while waiting for the labs and then comes home.
The next chemo treatment timeframe depends upon her good white blood cell level. Leukemia patients receive a daily series of shots of Neupogen® (filgrastim) - a GCSF (granuolite colony stimulating factor) that helps build white blood cells in the body. Yes, the shots are given by Mom, but one hour before the shot, I put EMLA cream on the injection site. The EMLA cream numbs the skin.
While her white blood cells are coming back, her ability to fight any type of germ is very low. She will need to stay at home much of the time.
Tuesday, April 5, 2001 at 02:01 AM (CDT)
Our Monday morning clinic appointment went as planned. A little blood was taken from her arm (which actually hurts less than the finger poke.) We waited in the playroom with some of our new friends (Katie who has ALL, her sister Sarah and her Mom Pam.) We then saw the doctor, she examined Delaney and we were able to go home. Delaney did not need any medicine or blood products.
On Wednesday, she will be admitted to Hem/Onc for three days of chemo (this will finish the second round.) The length of stay in the hospital will depend upon her blood counts, etc. We will keep you updated on the progress.
The plan is for our hospital stays to be for treatments and to do much of the recovery and healing at home. We are now praying for smooth treatment sessions with no complications!
One more request, Delaney's 5th birthday is Monday, April 9. Please say a few prayers that she feels good to enjoy her special day! We will be planning a birthday party in the summer when she is feeling up to all the guests and activities at once.
Friday, April 1, 2001 at 02:01 AM (CDT)
Delaney has been home since Friday late afternoon. We had a quiet weekend and pretty much stayed around the house. She is able to eat anything and can do activities as much as she feels she can. She is a little tentative and careful physically, but that is not stopping her from much. The goal is to keep her free from infection and germs.
Her spirits are up and her fun personality is a pleasure to have in the house.
It was also great to all be together again. Enclosed is a picture of Delaney and Kevin at home this weekend.
Monday morning Delaney and Mom will go back to the hospital for our first 'clinic' appointment. Clinic is also known as outpatient. Depending on her counts, she may need to stay for a couple of hours or it may be a very short visit and then back home. We also plan to visit some friends we made in the hospital.
On Wednesday, she will be admitted to Hem/Onc for three days of chemo (this will finish the second round.) The timing on the next trip home will depend upon her blood counts.
Wednesday, March 30, 2001 at 02:01 AM (CDT)
Delaney has amazed all of the doctors with her fast recovery from the lung infection that put her in the ICU. She has been out of the ICU for one week and is walking and riding the red tricycle (that carries her IV pump and medicines) all around the hospital. She looks adorable with her pink and purple hat, her pink blankie tied as a cape and her painted finger and toenails.
She has started her second round of chemo on Wednesday of this week. This round has 2 days on, 5 days off and 3 days on again.
She is going to come home for the weekend!!! We are very excited about this (also a little scared, to be honest.) Fortunately, the hospital is only a phone call or 15-20 minutes driving time away. She will go to clinic (at the hospital) on Monday to check her levels and be re-admitted on Wednesday for the remainder of the second round of chemo.
We also found out that her brother, Kevin, is not a match. We think we are going to go with the Stem Cell Transplant option. With this option, step cells are harvested from Delaney (a non-painful but time consuming process,) cleaned, dressed up, and frozen. Then these cells are re-introduced into her system after chemo treatment number 5. The good thing about this type of transplant is there is no GVHD (Graft Vs. Host Disease.) Since the cells are hers and only hers, her body will not reject them and it does not require additional medicines.
Friday, March 25, 2001 at 02:01 AM (CDT)
Delaney is back in the Hem/Onc unit and working to re-build her blood counts, specifically, her white blood cells and platelets. She is eating regular food and is completely off of the oxygen. She is also building up her strength she lost while she was in the ICU. The Hem/Onc unit feels like a resort with the colorful hallways/rooms, the families, and the wonderful staff. The feeling in the unit is one of hope and positive energy.
Once her strength and 'numbers' come up, she will begin the second round of chemotherapy. Keep in mind; AML M2 leukemia is a strong and persistent disease. The idea of the continuing rounds of treatment is to ensure it doesn't come back.
Monday, March 21, 2001 at 02:01 AM (CDT)
As of today, Delaney is breathing on her own without the ventilator!! She is able to talk and smile. It is a pleasure to be able to see her beautiful face and hear her voice. She is very happy about feeling better (I know you all agree!)
The other good news is that her bone marrow is clear of leukemia cells! This indicates that the treatment was 100% successful. She is working on rebuilding her strength.
Friday, March 18, 2001 at 02:01 AM (CDT)
Although Delaney continues to be in the ICU section of the hospital, she has made great strides. The doctors have taken out both chest tubes. She continues to be on the ventilator, but only for 1-2 more days. She is awake, alert, and breathing on her own much of the time.
When dealing with lung infections, surgery is not an option. Basically, you have to give medications and breathing treatments to help the lungs heal. This is not a quick process. The good news is that the progress is in the positive direction.
She continues to build white blood cells (no leukemia cells so far!) They did a bone marrow aspiration on Friday. The initial test showed no leukemia cells! We will get the biopsy results Monday or Tuesday.
Delaney's treatment includes a bone marrow transplant. At Children's Hospital, they use sibling or auto-stem cell transplants only. Kevin was tested this week (it will take 2-4 weeks to get the results.)
Saturday, March 12, 2001 at 02:01 AM (CDT)
Delaney continues to be in the ICU section of the hospital. She is relaxed and doing well with the ventilator. They have lessened the sedation and she is able to move around a little. She continues to build white blood cells (no leukemia cells so far!) Her x-ray this morning showed improvement in her lungs.
The ICU doctors and her Hematology doctor are thrilled at her progress and determination. We continue to receive the best care from the doctors and nurses at Children's Hospital.
This lung infection is an interruption in her leukemia treatment. We are going to do our best to avoid this type of interruption through the remainder of the treatments. She has four more courses of treatment to go through.
We continue to enjoy the positive feedback and steps Delaney is experiencing. Her body has responded very well to the first (and most intense) chemo treatment. This good response from the first treatment indicates that the subsequent treatments should go well also.
Yes, Delaney has lost her hair (actually a good indication of the chemo working.) She has several hats and scarves that she likes to wear. She knew this was going to happen and now she looks like the rest of the kids in the Oncology area. She also understands that when her disease is gone, her hair will grow back. Kids are amazing--these kids are much more interested in the toys and crafts than the fact that their hair is temporarily gone.
Thursday, March 10, 2001 at 02:01 AM (CDT)
Delaney continues to be in the ICU section of the hospital. She is relaxed and doing well with the ventilator. Yesterday, she went the entire day and night without a fever! (She has had one every day since Feb 23.) She continues to build white blood cells (no leukemia cells so far!)
The doctors have determined that her lung infection is a result of the Influenza B virus. And the good news is that there is a anti-viral medicine specifically for the Influenza B virus.
The ICU doctors and her Hematology doctor are thrilled at her progress and determination. We continue to receive the best care from the doctors and nurses at Children's Hospital. We are anxious to get back to the routine in the Hematology/Oncology area (I never would have dreamed that I would ever be saying this!)
Tuesday, March 8, 2001 at 02:01 AM (CDT)
Delaney is now in the ICU section of the hospital. Her lung infection is the priority at this time. She is on a ventilator and is monitored very closely. The doctors are closely watching her oxygen levels in her blood. She is stabilized and is not in any pain. In fact, they sedate the patient when on a ventilator (so she will not remember the trauma of it.)
Bob and I are able to be next to her, caress her, read and talk to her. According to the doctors, some patients remember voices and family members coming to see them. They are continuing to give her medications and try to rebuild her immune system.
Amy was with her last night/early this morning during the time she was having trouble breathing. The respitory therapist and the ICU doctor both said that she is amazingly strong physically and in spirit (has a strong will.) In fact, they said most other children would not have done so well on her own (without the ventilator) until this point.
The quote from the trauma team is "If anyone can beat the leukemia with this lung disease, it is this little girl!" We are asking you all to pray and send good thoughts to our precious little girl who is fighting so bravely.
Monday, March 7, 2001 at 02:01 AM (CDT)
This is a quick mid-week update. Delaney is in the IMU section of the hospital. The IMU is the Intermediate Monitoring Unit and is in the Critical Care section (it is a step down from the ICU.) She is still battling a lung infection, which they believe is viral (final test results coming in later today.) She is on oxygen and receiving breathing treatments every 3 to 6 hours. Since the infection is viral, we have to let it run its course and treat the symptoms as best as possible.
Good news--Delaney has approximately 400 white blood cells (remember normal is above 10,000.) And there is no leukemia cells within that 400. We have started rebuilding her white blood cell count and are thrilled there are no bad cells!!!
Tuesday, she had a bronchial procedure done and they also did a biopsy of her bone marrow. Along with the doctors, we decided to take a look at the bone marrow now because she was going to be under anesthetic for the bronchial treatment. Because of her respitory condition, we do not want to anesthetize her more than once this week. The preliminary results are great! Keep in mind the bone marrow is only beginning to rebuild (due to chemo,) so there was not a normal number of cells within the marrow, but there were no leukemia cells present in the marrow. The test will most likely be done again in the next 1-2 weeks.
Friday, March 04, 2001 at 02:01 AM (CDT)
Delaney is working to re-build her blood counts, specifically, her white blood cells. However, she is now battling a lung infection (pneumonia) during this time. Trying to fight a lung infection without any white blood cells is a real challenge. The doctors have been really watching her and giving her strong antibiotics to help her fight the infection. Her left lung is clear, still some congestion in her right lung. Through all this, she is an amazing child. She continues to take her medicines and go through tests (x-rays, CT scans, etc.) like a champ. She is sleeping more and eating less, so we have added nutrition to her IV fluids. The best news is that her high fevers have gone down.
According to the doctors, the bone marrow test will still be around March 9. Please keep your fingers crossed for no bad cells in the bone marrow. Of course, this could be re-scheduled based on her condition. Don't be concerned about all the testing. It is all painless to her (bothersome...yes, but pain free.) The team at Children's Hospital has the testing and care of kids in control.
Kevin is doing well also. As you may guess, it is an adjustment on the entire family. He is with Dad during the week and Mom on the weekends. His teacher at school has been very understanding through this. Some of our friends have graciously invited Kevin over for afternoons during the week. With this, he really feels connected and not left out. A special thank you to those families.
Friday, February 25, 2001 at 02:01 AM (CDT)
Delaney is done with the initial phase of chemotherapy and came through it with flying colors. The blood tests have found no leukemia cells in her blood for the last 6 days. However, the real test is in the bone marrow. That will be tested around March 9. Until that time, Delaney will be re-building her immunity.
For those who want to visit...yes, you can visit for a short time, but ONLY if you or your kids are not sick. Please call me before you come to ensure she is up for visitors. Because her white blood cells are at such a low level (basically 0,) she cannot afford to get even a little cold. To a leukemia patient, there is no such thing as a little virus or infection. Cards are also welcome as they are put up all around her and remind her of all those that are thinking of her.
She has her good days and bad days. On her good days, she is the wonderful personality we all know. On her not so good days, she is quiet. She is currently fighting some pretty high fevers. The doctors are testing and sampling just about everything they can, but all tests are clear. We are working to keep her comfortable. Per the doctor, the fever is not damaging any tissue, it just makes her uncomfortable.
She is in Children's Hospital in San Diego, Room 121 in Hematology/Oncology. To contact me, please email or call my cell phone at 858-442-2010. I will be checking my email at least once a week.
Once again, we appreciate all your prayers and good thoughts. Keep them coming as we progress through the stages.
Hope all your families are well.
Bob, Amy, Kevin and Delaney
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